You know what I really want to do?” Betsy asked as I wheeled her down the hallway. She was in her eighties, widowed, and living in a nursing home. She had only recently, and unhappily, started using a wheelchair. “I really want to go outside and feel the wind in my pussy again. Could you help me with that?”
I just about lost it, right there in the hallway. When I stopped laughing, I said, “I don’t think I’m allowed to do that. I think I might actually get in a lot of trouble if I pulled off your pants and wheeled you around outside half naked.”
She sighed. “That’s a shame. Probably because all the bigwigs in this place are men. They have no idea how good it feels.”
That made me think: Had I ever felt that? Did I know how good that feels?
• • •
THAT NIGHT, I was at a get-together of other mothers in the neighborhood. I was dying to tell that story, because, really, who wouldn’t be? So after a few glasses of wine, I started in.
Until another woman interrupted me. “Oh my God, Kerry,” she said, “I can’t stand to hear stories about the dying! Stop! It’s too depressing!” Some of the other women laughed, and agreed.
So I stopped, embarrassed.
Now, in this woman’s defense, I’m pretty sure she was drunk, or on her way there. I don’t think the other women meant to be mean. They were mostly stay-at-home mothers of very young children. I did that, too, for five years, and I know how difficult, all-consuming, and exhausting that work is. Being a stay-at-home mother was exponentially more emotionally, mentally, and physically draining than being a hospice chaplain could ever be. I think those women needed a night of laughter and freedom from responsibility. I think they thought whatever I was going to say would be a buzzkill on a rare night out.
How could I explain that while there are sad moments working in hospice, they’re far outweighed by happy, enjoyable, boring, peaceful, frustrating, tedious, and yes, hilariously funny moments. These women were making the same mistake as the people who ask me earnestly, their voices hushed and their brows furrowed, “What is it like to work with the dying?” Both groups talk about and think about “the dying” as though they are some sort of exotic species. Both groups assume that “the dying” are different from the rest of us—people to be either especially feared or especially esteemed. This idea—that people who are dying are magical, wise, better, or, alternatively, terrifying, unearthly, macabre, is rampant. It’s also not true.
The dying are just people, like you and me, who happen to be doing something we’ve never done. To die is a verb, like to jump, to eat, or to laugh. It’s something people do, not who they are.
People don’t somehow transform drastically into something else when they’re dying. They’re just doing something you haven’t done yet.
I think of it sort of like sex. Remember back when you were a teenager, before you’d had sex for the first time? The mystery, the fascination, the ridiculous rumors? The fear? The sense that something about your very being would change when it finally happened?
Now it’s just something you do, not who you are.
Happy, healthy sex can be a powerful experience and expression of who you are, but it doesn’t fundamentally change you.
Dying isn’t going to change who you fundamentally are, either. If you were a hilarious, fun-loving, sex-in-a-meadow kind of person at thirty-five, you’ll probably still be that way at eighty-five, even if you can’t get your own pants off anymore. You might be even funnier, because you’re no longer worrying as much what other people think.
If you were a selfish jerk in life, there’s a good chance you’ll still be a selfish jerk when you’re dying. Dying doesn’t automatically make you a better person. If you haven’t asked for forgiveness or done any work to rebuild damaged relationships, reconciliation isn’t going to magically come to you just because you’re at death’s door.
I was working in a hospital when I was called very late one night to do a bedside prayer service. The patient had had a massive stroke several days before and had never come back to full consciousness. The nurses believed that he was now close to death. His wife, his children and their spouses, and several grandchildren were all gathered around the bedside. He wasn’t responding to anyone or anything anymore. I spoke briefly with his wife and asked her what she wanted from me.
She wanted a prayer. In these situations, I ask what the person who is dying is like—his family, his faith, his history, his personality—to try to incorporate some of that into what I say. Obviously I don’t usually know the dying person, and I won’t be able to get to know them at this point, but I use what the family tells me to try to say a prayer that will be at least a little bit personal and meaningful to everyone there.
In this case, the wife and kids talked about what a devoted father the man in the bed was, how he loved to take his children fishing, how he always made sure he went to their softball games and track meets and recitals. I incorporated all these details into my prayer, and together we commended him to God.
Afterward, the wife and kids told me how beautiful and meaningful they’d found that prayer. They thanked me profusely.
And I won’t deny this—that felt great. It was an ego boost.
I left the family at the bedside and walked down the darkened hallway, feeling pretty good about myself. A man ran to catch up with me.
“Hey!” he called out. I stopped and waited for him, and we walked together to the elevator. “I know they all loved your prayer, and you probably think he was a great guy,” he said hoarsely. “But he wasn’t. That’s his second wife, and his second kids. I’m one of his first kids. I’m the only one of his first kids who’s even here. The rest haven’t talked to him in years. I just want you to know who he really is.”
He stood there in the strange brown light of the hospital hallway at three in the morning, then continued. “He’s a horrible man. He abandoned my mother and us when we were all little kids. Him and his mistress, that woman you met in there, moved all the way across the country and started a new life. New family, new kids, like we didn’t exist. We saw him twice a year.
“How do you just leave your kids, and replace them with new ones? Yeah, I’m sure he was a great dad to them. He was a great dad to us—until he left. He’s a shitty father, and your prayer was wrong, flat-out wrong. Fuck him. Fuck them. And fuck you, lady.”
We continued to walk slowly toward the lights over the elevators at the end of the hallway. He stabbed the button for the lobby.
“I’m sorry my prayer hurt you,” I said.
“Yeah. It didn’t hurt me. I just want you to know the truth.”
“I’m sorry your father abandoned you.”
“Don’t apologize for that. He did it, not you.”
We waited.
“I’m sorry I said, ‘Fuck you,’” he said.
“It’s okay,” I said. “I messed up.”
“Yeah,” he said.
The elevator car arrived and we got on.
“You know what I wanted?” he asked. “I just wanted an apology. I just wanted him to look at me and say, ‘I’m sorry.’ That’s it. I didn’t get it.”
The doors opened. He waited for me to get out first. I turned to him and said, “Can I get you a cup of coffee? We could talk for a minute if you want.”
“Nah. There’s nothing here I want,” he said. He walked out of the elevator, through the lobby, and into the darkness.
• • •
IF THE DYING don’t somehow transform into especially wise, mystical, and magical people, neither do the people who take care of them.
Caregivers are not on the whole kinder, stronger, more patient, or more loving than the rest of us. They are not special, and despite what all too many people tell them, they do not feel blessed by God to have been put in the situation they’re in. Or at least, none of them has ever said that to me. Many felt abandoned. Most just didn’t want the job—not because they didn’t want to take care of their spouse, parent, or child, but because they didn’t want their spouse, parent, or child to be dying in the first place.
The popular insistence that caregivers to the dying are living saints is connected to the belief that the dying are different from you and me. And it does real harm.
A husband whose wife was bedbound for more than ten years with multiple sclerosis told me that sometimes he saw the women who used to be his wife’s friends in the grocery store or at church. They earnestly squeezed his hands and wanted him to know that they were praying for her.
“She doesn’t need your fucking prayers!” he exploded. “She needs you to visit! Don’t make God your fucking patsy because you don’t want to come!”
People who are taking care of the dying are doing exhausting work—exhausting physically, emotionally, mentally, and spiritually. They’re doing it with only as much strength and energy and the same needs and weaknesses as they had before the bottom fell out and their life was turned upside down by a terminal diagnosis in the family. Pretending that they have superhuman strength means that all too often, we’re allowing them to go it alone. It deprives them of the help they need, it deprives the dying of the comfort and companionship they need; and it deprives us, as well, of an understanding we very much need: that nothing—not even death—effortlessly takes away our weaknesses or magically transforms us into who we want to be.
• • •
SOMEONE ONCE ASKED ME if I thought people should plan what their dying words will be in advance. The short answer is: No. Whatever last words you say, there’s a good chance you’re probably not even going to be aware that they’re your last words while you’re saying them. That Hollywood death, where people whisper secrets or words of great wisdom right before breathing their last, doesn’t happen. Most people either fall unconscious for days before they die or die too suddenly to speak. Or they are too weak or confused to speak meaningfully, or they say last words that are expressions of surprise, like “Look!” or “Oh my goodness!”
The longer answer is: Why would you do that? If you had something so important to tell your loved ones that you’re taking the time to plan it out, why in the world wouldn’t you say that important thing right now? This very moment?
If you want to apologize, then apologize now. If you want to tell someone you’re proud of them, say it right now. If you want to express your love, call up and say, “I love you.” If you want to ask for forgiveness, do it this second, while there is still time to do the actual work that’s involved in seeking and granting forgiveness and arriving at some reconciliation. Don’t hold back.
Those things might be difficult, even frightening, now, but dying won’t make you courageous. Dying doesn’t make you someone else. If you can’t find the strength while eating, walking, or vacuuming the living room, it seems foolish to think that you’ll find the strength while doing an entirely new activity.
That’s not to say that enormous change and growth can’t happen in the last months, weeks, and even days of life. It does. I’ve seen it.
But I’ve also seen the work that goes into such changes. It’s the same work that change requires when one is healthy, when one isn’t learning how to do something new.
• • •
IF THERE IS any great difference between the people who know they are dying and the rest of us, it’s this: They know they’re running out of time. They have more motivation to do the things they want to do and to become the person they want to become, up until the very last breath. But you don’t have to wait until you’re dying to do that. There’s nothing stopping you from acting with the same urgency the dying feel.
If you want to be someone who knows what the wind feels like on your skin when you stand outside naked, do it now, while you can still pull down your own pants. Do it now, so that you can remember what it feels like when you can’t do it anymore.
Become who you want to be while you can enjoy it. Don’t put off doing the work of becoming who you want to be. Waiting will not make it easier, and time is short.