After Julie learned that she was dying, her best friend, Dara, wanting to be helpful, sent her the well-known essay “Welcome to Holland.” Written by Emily Perl Kingsley, the parent of a child with Down syndrome, it’s about the experience of having your life’s expectations turned upside down:
When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss.
But . . . if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.
“Welcome to Holland” made Julie furious. After all, there was nothing special or lovely about her cancer. But Dara, whose son had severe autism, said that Julie was missing the point. She agreed that Julie’s prognosis was devastating and unfair and a complete departure from how her life was supposed to go. But she didn’t want Julie to spend the time she had remaining—perhaps as long as ten years—missing out on what she might still have while alive: Her marriage. Her family. Her work. She could still have a version of those things in Holland.
To which Julie thought, Screw you.
And also, You’re right.
Because Dara would know.
I’d already heard about Dara from Julie, the same way I hear about all of my patients’ close friends. I knew from Julie that when Dara was at her wits’ end with worry and grief over her son’s endless hitting and head-banging, his tantrums, his inability to have a conversation or feed himself at four years old, his need for multiple weekly therapies that had taken over her life but also didn’t seem to be helping, Dara would call Julie, despondent.
“Now, I’m embarrassed by this,” Julie said after she explained her initial anger toward Dara, “but when I saw what Dara was going through with her son, my biggest fear was to end up in her situation. I love her so much, and I also felt like any hope for the life she wanted had died.”
“Like you feel now,” I said.
Julie nodded.
She told me that for a long while, Dara would say, “I didn’t sign up for this!” and catalog all the ways in which her life had been irrevocably changed. She and her husband would never have cuddles and carpools and reading stories before bed. They would never have a child who would grow into an independent adult. Dara would look at her husband, Julie said, and think, He’s an amazing father to our son, but she couldn’t help contemplate the amazing father he would have been to a child who could fully interact with him. She couldn’t help the sadness that would descend when she let herself think about the kinds of experiences they wouldn’t be able to have with their child, ever.
Dara felt selfish and guilty for her sadness, because she wished most of all that her son’s life could be easier for his sake, that he could live a fulfilling life, one with friends and lovers and work. She felt enveloped by both pain and envy when she saw other moms playing with their four-year-olds at the park, knowing that in that situation, her son would likely lose control and be asked to leave. That her son would continue to be shunned as he grew older, and so would she. The looks she got from the other moms, the ones who had typical kids with typical problems, added to her sense of isolation.
Dara phoned Julie often that year, each call more hopeless than the previous one. Depleted financially, emotionally, and practically, she and her husband decided not to add a sibling to the mix—how could they afford and have time for another, and what if that child also had autism? She’d already stopped working in order to manage their son’s life while her husband took on an extra job, and she didn’t know how to cope. Until one day she came across “Welcome to Holland” and realized that she would have to not only cope in this strange land but find joy there where she could. There were still pleasures to be had, if she could let them in.
In Holland, Dara found friends who understood her family’s situation. She found ways to connect with her son, to enjoy him and love him for who he was and not focus on who he wasn’t. She found ways to stop obsessing about what she did and did not know about tuna and soy and chemicals in cosmetics during her pregnancy that might have harmed her developing baby. She got care for her son so that she could care for herself and do meaningful part-time work and have meaningful downtime too. She and her husband found each other and their marriage again while also struggling with the challenges they couldn’t change. Instead of sitting in their hotel room the whole trip, they decided to venture out and see the country.
Now Dara was inviting Julie to do the same, to look at the tulips and Rembrandts. And after Julie’s anger about “Welcome to Holland” subsided, it occurred to her that there would always be somebody whose life seemed more—or less—enviable. Would Julie trade places with Dara now? Her first instinct: yes, in a heartbeat. Her second: maybe not. She’d come up with various scenarios: If she could have ten great years with a healthy child, would she take that over a longer life? Is it more difficult to be sick yourself or to have a child who is? She felt horrible even having these thoughts, but she couldn’t deny them either.
“Do you think I’m a bad person?” she’d ask, and I’d assure her that everyone who comes to therapy worries that what they think or feel might not be “normal” or “good,” and yet it’s our honesty with ourselves that helps us make sense of our lives with all of their nuances and complexity. Repress those thoughts, and you’ll likely behave “badly.” Acknowledge them, and you’ll grow.
In this way, Julie started to see that we’re all in Holland, because most people don’t have lives that go exactly as planned. Even if you’re lucky enough to be traveling to Italy, you might experience canceled flights and horrible weather. Or your spouse might have a fatal heart attack in the shower ten minutes after the two of you have glorious sex in a luxurious Rome hotel room during a trip to celebrate your anniversary, as happened to an acquaintance of mine.
So Julie was going to Holland. She didn’t know how long her stay would be, but we were booking her trip for ten years and would change the itinerary as needed.
Meanwhile, we’d work together to figure out what she wanted to do there.
Julie had just one stipulation.
“Will you promise to tell me if I’m doing something crazy? I mean, now that I’m going to die sooner than I ever imagined, I don’t have to be so . . . sensible, right? So if I’m going overboard, and things get a little over-the-top, you’ll tell me?”
I said I would. Julie had spent her entire life being conscientious and responsible, doing everything by the book, and I couldn’t imagine what her version of over-the-top would look like. I figured if anything, it would be the equivalent of the goody-goody student who went a little crazy by having one too many beers at a party.
But I’d forgotten that people are often at their most interesting when they’ve got a proverbial gun to their head.
“Bucket list,” Julie said in session as we tried to envision her Holland. “It’s such a funny term, isn’t it?” I had to agree. What do we want to do before we kick the bucket?
Often people think about bucket lists when somebody close to them dies. That’s what happened for Candy Chang, an artist who, in 2009, created a space on a public wall in New Orleans with the prompt Before I die _____. Within days the wall was completely filled. People wrote things like Before I die, I want to straddle the international dateline. Before I die, I want to sing for millions. Before I die, I want to be completely myself. Soon the idea spawned over a thousand such walls all over the world: Before I die, I would like to have a relationship with my sister. Be a great dad. Go skydiving. Make a difference in someone’s life.
I don’t know if people followed through, but based on what I’ve seen in my office, a good number may have had momentary awakenings, done a little soul-searching, added more to their lists—and then neglected to tick things off. People tend to dream without doing, death remaining theoretical.
We think we make bucket lists to ward off regret, but really they help us to ward off death. After all, the longer our bucket lists are, the more time we imagine we have left to accomplish everything on them. Cutting the list down, however, makes a tiny dent in our denial systems, forcing us to acknowledge a sobering truth: Life has a 100 percent mortality rate. Every single one of us will die, and most of us have no idea how or when that will happen. In fact, as each second passes, we’re all in the process of coming closer to our eventual deaths. As the saying goes, none of us will get out of here alive.
I’ll bet right now you’re glad that I’m not your therapist. Who wants to think about this? How much easier it is to become death procrastinators! Many of us take for granted the people we love and the things we find meaningful, only to realize, when our deadline is announced, that we’d been skating by on the project: our lives.
But now Julie needed to grieve all the things she’d have to leave off her list. Unlike older people, who grieve for what they’ll be losing and leaving behind, Julie was grieving for what she would never have—all of the milestones and firsts that people in their thirties just assume will happen. Julie had, as she put it, “a concrete deadline” (“Dead being the operative part of the word,” she said), a deadline so unforgiving that most of what she’d expected would never come to pass.
One day Julie told me that she’d begun to notice how often in casual conversation people talked about the future. I’m going to lose weight. I’m going to start exercising. We’re going to take a vacation this year. In three years, I’ll get that promotion. I’m saving to buy a house. We want to have a second baby in a couple of years. I’ll go to my next reunion in five years.
They plan.
It was hard for Julie to plan a future not knowing how much time there was. What do you do when the difference between a year and ten is enormous?
Then something miraculous happened. Julie’s experimental treatment seemed to be shrinking her tumors. In a matter of weeks, they were almost gone. Her doctors were optimistic—maybe she had longer than they’d thought. Maybe these drugs would work not just now or for a few years but for the long term. There were a lot of maybes. So many maybes that when the tumors disappeared completely, she and Matt began, very tentatively, to become the kind of people who plan.
When Julie examined her bucket list, she and Matt talked about having a baby. Should they have their own child if Julie might not be around for middle school—or, if things went very badly, preschool? Was Matt up for that? What about the child? Was it fair for Julie to become a mother under these circumstances? Or would Julie’s greatest motherly act be the decision not to become one, even if it would be the hardest sacrifice she’d ever make?
Julie and Matt decided that they had to live their lives, even in the face of such uncertainty. If they had learned anything, it was that life is the very definition of uncertainty. What if Julie remained cautious and they didn’t have a baby because they were waiting for the cancer to return—but it never did? Matt assured Julie that he would be a committed father no matter what happened with Julie’s health. He would always be there for their child.
So it was decided. Looking death in the eye would force them to live more fully—not in the future, with some long list of goals, but right now.
Julie kept her bucket list lean: they were going to start their family.
It didn’t matter if they ended up in Italy or Holland or someplace else entirely. They would hop on a plane and see where they landed.