As a specialist in issues of death and grief, I was called in by an oncologist to see a 29-year-old patient named Leslie, who was dying of cancer. As I approached her hospital room, I found her mother, tall and straight-backed, standing outside like a guard waiting to meet me. She said, “Under no circumstances should you tell Leslie that she’s dying.” I nodded, having heard this kind of thing before. “I don’t want her to know,” the mother continued. “She needs to keep fighting. She needs to have a complete life.”
“Well,” I told her, “it’s not my place to break any news to her.”
I entered the room to find Leslie sitting in a chair next to her bed. She stood up to shake my hand but immediately sat down from the effort.
“Nice to meet you,” I said, finding it hard to believe that Leslie was only a few years younger than me. Her sunken cheeks and fragility had aged her dramatically. “How are you doing today?” I asked.
“I’m dying,” she said. “That’s how I’m doing today.”
“Oh, so you know?” I asked.
“Yes, of course I know,” she said. “It’s my body. I was the first one to know. But, listen, I’m really glad you’re here, because I need to talk to you about something.” I took a moment to remind myself that whatever was on her mind, I was there simply to be present, and to bear witness to her dying and her grief, no matter what that looked like.
It turned out Leslie didn’t want to discuss dying at all. She wanted to talk about the struggles she was having with her boyfriend, the little tiffs they were getting into, her insecurities and jealousies—things that sounded like everyday relationship challenges. She told me they’d been together about two years and had met just when her health had begun to decline.
As I listened to the details of her love life, I couldn’t help but think, What kind of guy gives his dying girlfriend a hard time? Nonetheless, we had a nice session about how hard relationships can be. We talked about how it felt for her when he didn’t call when he was supposed to, and some ways she could express these feelings to him. She was smiling when I left, and we agreed to see each other the following week.
When I returned for our second meeting, Leslie had been moved to hospice care. “This place isn’t for me,” she said as soon as I walked in. “My boyfriend is going to leave me if he sees me in this place.”
Resisting the urge once again to tell Leslie that he sounded like a jerk, I noted instead, “You two didn’t really have a lot of good health time together to just enjoy dating and getting to know one another.”
“That’s why I have to get out of this place,” she replied. “So I can be with him.”
The hospice resembled a hotel lobby with 10 private rooms, each with its own patio overlooking beautiful gardens. “What if this is the best place for your care now?” I asked.
“That doesn’t matter,” she said, beginning to cry. “I don’t want to lose him.”
After sitting with her for a few minutes, I asked her to tell me more about what she wanted from him. It turned out her dreams for the two of them were full of whimsy, romance, laughter, the kind of Hollywood rom-com montage we all long for at some point in our lives and usually grow out of. It was doubtful Leslie would get to experience much of this before her death, nor would she have the time to grow out of this vision of intimacy.
As she talked, I thought, my role is to bear witness not only to her death, but to her life—the one she’s having now. The reality is that we don’t suddenly become emotionally mature in our relationships just because we’re dying. And just because we’re dying doesn’t mean that death is our primary focus. In fact, other than when we first met, Leslie had barely mentioned her death. I wondered if and when she would; certainly, she wasn’t speaking about it with her mother, or with her boyfriend for that matter.
Then as I was getting up to leave that day, Leslie suddenly said, “Last night, I went out on the patio. I was just sitting there, looking up at the stars, and I saw them wheel out a gurney with a body bag on it. They wheeled it right by me.”
As I gently nodded, she grabbed my hand and asked, “When I die, do I have to go in a body bag?”
I said I didn’t know the answer but promised to find out. After speaking to the charge nurse who called the mortuary, I went back into Leslie’s room and said, “I actually have some good news. You only need a body bag if you have an infectious disease. So if there’s anything positive about the cancer, maybe it’s that you don’t need a body bag.”
“Thank goodness,” she said. “Please, let everyone here know that I don’t ever want to be in a body bag.” I assured her I’d document it.
As I went to her room for our next session a few days later, I wondered if we’d be talking death or relationships. It turned out to be both. Specifically, we were forced to confront the death of her relationship, since the boyfriend had ended things with her the day before. Understandably, Leslie was devastated. Breakups are painful for all of us, but dealing with issues of abandonment as she was dying was particularly complicated and painful. All I felt I could do for Leslie was try to help her find some strength.
“Were you okay before you met him?” I asked.
“Yes,” she said.
“You’ll still be okay,” I assured her. “Your family is with you. Whatever future is in front of you, there are people who care.”
As our session was winding down and Leslie seemed much more composed, I noticed a costume in a package by her bedside. Halloween was a few days away. In a hospice, much like in a hospital and other places where people are confined without a lot to do, they have an activity planner, who did her best to host festivities. “Do you have plans for Halloween?” I asked, pointing at the package.
To my surprise, Leslie said, “Yes, I have a friend who’s a makeup artist. She’s going to make my costume perfect.” As pale and gaunt as she was, I hoped Leslie wasn’t planning to dress as a zombie.
Instead, when I walked into her room on Halloween, I found her dressed as Dorothy from The Wizard of Oz. There was a sweet innocence about her appearance—until she beckoned me over to show me what the makeup artist had done. “This is the best part,” she said, revealing the creation: a large, bloody carving knife that appeared to pierce through the center of her hand.
“Watch,” Leslie said to me, “this is going to be fun.” Getting up on her thin, wobbly legs, she hid her hand in the folds of her skirt and headed out to the common room.
They’d decorated the whole hospice for Halloween, and the activity planner had the largest orange and black cake I’d ever seen laid out on the table. In front of the staff members milling around next to it, Leslie grabbed the actual cake knife as if to cut a piece and said, “Mmm, this looks good.” Then she slipped the real knife behind her back and held her bloody, prop-knife hand high in the air, crying, “Oh my gosh!” In an instant, the staff members let out a collective scream. Leslie was delighted and laughed uproariously. I couldn’t help but laugh myself. As I left that evening, I marveled at how her humor could persist even after the breakup, and even as her body was giving out.
In our next session a few days later, we talked about the idea that Dorothy, at the end of her journey through Oz, learned everything she truly needed was within herself. She told me it felt a bit freeing not to have the boyfriend around anymore. “He tied me down to a world I’m no longer going to be a part of,” she said. “He needed to be free also.”
At this point, Leslie’s mother walked into the room without knocking. “I need Leslie to understand that I was there the moment she was born, and I’m going to be there the moment she dies,” she said, locking eyes with me.
Leslie turned to her mom and in a quiet voice said, “Mom, I’ve never died before. I have no clue what this is going to be like. Maybe I’m going to want to be holding your hand. But maybe it’ll be a really private moment. Whatever happens, Mom, don’t judge our relationship by that last moment.”
Her mother turned to me and said, “Tell her I’m going to be here.”
I replied, “I think you’re doing very well, and some things may be out of our control.”
She shook her head at the both of us as she left, muttering. “No, no, I’m going to be here.”
Toward the end of the last session I had with Leslie, she said to me, “I’ve been thinking about the body bag. I want it.”
“You do?” I asked.
“Tell me why,” I said.
“Because that’s what you do with dead bodies. You put them in body bags.”
And there it was. Her acceptance of what was happening. The next day she passed away, with her mother down the hall, filling up a glass of water from the fountain.
Thinking about Leslie, I’ve come to realize that although she didn’t have a long life, she did have a complete one. We all want more time here, but the reality is that a complete life doesn’t always involve a Hollywood romance, or marriage, or children, or even old age. It involves fully living in the time we’re given. Leslie felt love, delighted in humor, and knew family. She was a teacher of life to her mother, to our staff, and to me. In her short time, she lived with gusto and died with grace. That’s a complete life.
Photo by Sam Levitan
David Kessler, MA, RN, FACHE, is one of the world’s foremost experts on healing and loss. He’s the author of six bestselling books. His newest is Finding Meaning: The Sixth Stage of Grief. He coauthored two bestsellers with Elisabeth Kübler-Ross.