We can go outside and smoke a cigarette together, if you want,” Reggie said. “You just gotta wheel me down.”
“I don’t smoke, but I’ll go with you. It’ll be nice to sit outside,” I said.
“Nah. Forget it. It’s no fun to smoke alone.”
Reggie had chronic obstructive pulmonary disease. Basically, he was slowly suffocating to death. Each day, he was a little less able to take a deep breath. Each day, a little less able to get oxygen, a little more winded. People with COPD are aware at all times of how they’ll die. They’ll die struggling for a breath, and they know what that will feel like because they’re doing it all day, every day, right now. Except it will be worse, much worse.
• • •
NOT SURPRISINGLY, people with COPD are what hospice workers sometimes call “needy.” They need a lot of attention. If you’re really, really frustrated with the Reggies of the world, you call them “attention seekers.”
Of course, when we call someone needy, it really means that we don’t have the time, the energy, the inclination, or the capacity to meet their need. We blame the need, or worse, the person with the need, instead of the lack of time, energy, inclination, or capacity. It’s not easy for heath care workers to admit we aren’t meeting a need. After all, most people went into this work to try to help people. We’re trained to recognize, assess, and meet needs. That’s what we do. So when our efforts are falling short, when we are simply not enough, when we’re suffocating in a patient’s neediness, it feels terrible. It’s easier to blame the patient than to acknowledge how very limited any one of us is in the face of a disease like COPD.
Reggie lived in the public nursing home, an enormous and grand-from-the-outside building that had been built as a maternity hospital almost a hundred years ago. The inside was significantly less grand, but the nurses and aides worked hard, with little in the way of amenities. Murals of the outdoors were painted in the hallways. Leaded casement windows in the rooms let in sunlight and sometimes made rainbows on the walls. But it was a nursing home. An institution is an institution, no matter how loving the staff or regal the building.
Reggie pulled a white plastic cart on wheels over to the bedside. His short legs dangled over the side of the mattress and didn’t touch the floor.
“Well, hang on. Lemme see what I got in here. I know I got something.” He rummaged through the clear plastic drawers full of random stuff—rubber gloves, packs of gum, paperbacks, tissues, tubes of lip balm, magazines.
“Hah!” he said triumphantly. He pulled out four cellophane packets of mostly uncrushed saltines and a tiny tub of strawberry jelly with gold foil on top. “Would you like some?” he asked almost shyly, as he extended two packets of wrapped crackers to me.
“Thanks, Reggie.”
“I wish I had something to drink to give you.”
“The crackers are perfect.”
“What’s your name again?”
“Kerry.”
“Oh, that’s right. So, Kerry, I’ve been thinking about my lung transplant again.”
“Oh yeah?”
As a chaplain, I don’t decide what a patient and I will talk about. I listen to what’s on the patient’s mind, what’s burdening him or giving him great joy that particular day. Reggie wanted to talk about a lung transplant. All the time.
When I first started visiting, he wanted to talk logistics. Where his transplant would take place, what he needed to get in place for it to happen, the letters he had written to various doctors and transplant centers. What might have happened (or was going to happen) to the poor soul who was going to donate his lungs to Reggie. His hopes for what his life would be like once he got the transplant. He would move out of the nursing home and find his own apartment, maybe on the water. He’d buy a boat, a little Boston Whaler, and go fishing. He might even reconnect with his sister, whom he had not seen in thirty years. Maybe he would even look up his ex-wife, whom he’d left decades ago. Talking about a lung transplant made him happy. I listened.
Over time, though, talking about the lung transplant started to make him angry. He was angry at the nursing home nurses, who either ignored his transplant plan or thought it was cute. I can understand that anger: Imagine that there’s only one thing that you think can save you, and you’ve hung your hope on it, and the people you rely on for your very survival think your hope for survival is just darling.
But Reggie’s real rage and frustration were reserved for Stacy, the hospice nurse, and Sue, the social worker. These were the two people, in his mind, who had the power to save him. Every time they visited, he peppered them with demands, wanting to know why they were not getting everything in place for the transplant. They had power and clout and connections. He had none of those things. No one would take him seriously. He vented his rage and frustration and impotence.
Here’s the thing about Reggie’s lung transplant: It was never going to happen. Ever. He would not survive surgery. Stacy had explained to him dozens of times that he physically did not qualify for a transplant. Sue had explained it again and again, as well. They grew frustrated with him, with his passive-aggressive manipulations, his temper, the nasty things he said, his unwillingness to accept reality. There were dozens of other patients to see, and Reggie was needy and demanding. He needed to talk about that transplant, he demanded that they do something, and he would not or could not accept what they told him. Reggie believed that the nurse and social worker had the power to grant his wish, and they were not using it. He believed that they could make it happen, if they wanted to. So he hounded them.
Me, the chaplain, I had no power. A chaplain brings nothing. Unlike the nurse, I have no medication to give; unlike the social worker, I have no programs to sign up for. I don’t take anything, either—no urine samples, no vital signs, no signatures on documents. I don’t make anything happen.
All I can do is show up and listen. This, as strange as it sounds, is where a chaplain’s power lies, in the powerlessness of the role. Because there was no point in hounding me to get the transplant going, Reggie didn’t. We could just be there together. He could stop fighting, even if it was just for that hour. He didn’t have to demand anything, and I didn’t have to become a “bad guy” in his mind.
When Reggie vented his frustration to me, his fury would eventually burn out. Then he’d grow wistful. He would imagine. He would imagine a different life for himself.
“Wouldn’t it be great if I could take a deep breath?”
“Yeah, it’d be wonderful.”
“Wouldn’t it be great if I could get outta here?”
“Yeah, I really wish you could, Reg.”
“I’d get a little dog. Just a mutt.”
“What would you name him?”
“Don’t know,” he said. “I could even come and visit you and your family. You got kids?”
“I do.”
“I could take ’em fishing.”
“Wouldn’t that be something?”
“New lungs is the only way any of that could happen.”
“A lung transplant would let you do all that, and get out of here.”
“See, you understand how important this is. You understand what I want.”
“You want a lung transplant because you want to live, and that’s a reasonable thing to want.”
“Yeah. Exactly. It’s reasonable. It’s not crazy. I want another chance to live. I want to start over again. I want to live a good life.”
Because Reggie had not lived a good life. It wasn’t just that bad things had happened to him. No, it’s that he did bad things to other people. For a living.
Talking about the lung transplant became a way of talking about life, and about the life he’d led, and the life he wished he had led instead. Reggie had literally no one at the end of his life—not a single friend, lover, or family member. Just half-coherent memories of the violence he had committed on a regular basis his entire life.
I couldn’t give Reggie new lungs, but I could offer him the most powerful thing a chaplain, or any of us, has: my presence. Reggie and I could talk about hope for something new and regret for what had been. Because that’s what he was really talking about. The lung transplant was really a way to talk about hope and hope’s flip side, regret. In quiet moments, not at every visit but more than once, Reggie would bow his head all the way down, swing his legs back and forth under the edge of the bed, and say, “I’m not stupid. It ain’t gonna happen. But I can’t let it go.”
Deep down, Reggie knew that he couldn’t have that transplant. But giving up on the quest would be to give up on hope, and that was something he just couldn’t do.
Now he had less than six months left to live. Those six months would be spent in a tiny room with a leaded glass window on the sixth floor of a municipal nursing home that had once been a maternity hospital, with a plastic cart full of tiny salt and pepper packets and books of already-completed crossword puzzles, alone with his thoughts.
The lung transplant was a vehicle—like that little Boston Whaler. It was a vehicle to his long-lost sister, his long-left wife, my children, whom he’d never met, and to me, whose name he could never remember. It was a way to other human beings, with whom he’d connected so little.
Reggie wanted to talk about the lung transplant because that was his hope. His great hope not just for survival, but for a chance to redo his life. To live again, but this time differently.
If not a lung transplant, what could his hope be?
• • •
WHEN MY FATHER DIED, I decided that I’d live my life in such a way that I would never again have any regrets. I even wrote that down as a promise to myself on a piece of paper.
That I thought such a thing was feasible just shows how young I was when he died.
I’ve never met a single patient who didn’t have at least some regrets. Not all of these regrets were as deep as Reggie’s. Most people haven’t done such regrettable things.
But there is always something to regret, even in a joy-filled life. A woman—mother of five and happily married for forty years—regrets dropping out of college to marry her sweetheart. A farmer who never moved away from the town where he’d grown up wonders what would have happened if he had stayed in Japan after the war for even a year or two, as his commanding officer asked, instead of rushing home to the family pecan orchard that gave him such contentment in his life.
Life is a million choices, and every choice is a choice not to do something else, and so regrets accrue with life. It’s inevitable. Thinking through those regrets, though, gives any one of us a chance to think about what we wish had been different. It’s a chance to think about what we feel is missing in our lives, what we hope could be different. Most important, even if just in a small way, it’s a chance to act on that understanding.
Hope is the belief that better things are possible. Regret shows us what those better things we hope for are. Regret hones hope, sharpens and clarifies the desire at the heart of it. If you’re alive, even if you’re on hospice, you can still work on making those hopes come true.
As a very young woman, I thought regret was a failure, something to avoid at all costs. It is, in fact, a window. It’s an unasked-for chance, an uncomfortable prompt, a painful encouragement to imagine what else could be. If you let it, regret can be a vehicle to hope. But you have to accept it first. You have to hold it up to the light streaming in from those leaded casement windows, in order to see clearly what it is that you wish was different in your life.
There may be thousands of regrets in a single life. Hope, though, can take millions of forms. Hope is a shape-shifter that can appear and grow in even the tiniest of cracks, at even the last hour. People sometimes ask what hope could mean for a hospice patient who has no hope for a cure, no hope for returning to the life they had once known and loved. What could hope possibly look like to someone who is dying? It can mean anything. It could look like everything.
• • •
REGGIE’S REGRET WAS how empty and alone his life was. His hope was for connection, perhaps even love. He yearned for that. He didn’t have much to work with. His ex-wife wasn’t coming back. Neither was his sister. He had pushed away every aide and nurse with his demands. His very neediness seemed to ensure that his need for love at the end of his life would never be met, that his hope for connecting with another person, finally, would come to nothing.
• • •
IT WAS PATRICK who was on call the night Reggie died. Reggie had requested the chaplain, and when Patrick arrived, Reggie looked at him and asked where the girl with the blue eyes was. When Patrick explained that he was the chaplain for the night, Reggie turned and faced the wall.
Was that me? Patrick asked the next day, and did I know the patient? Yes, I said, that was me. Of course I knew him.
Here’s the surprising thing: At that time, I had not seen Reggie for almost six months. I was no longer assigned to his nursing home. We had said good-bye a long time ago, and even then, he didn’t know my name, had seemed unconcerned that he would be meeting with a new chaplain instead of me. I wasn’t sure I had made any sort of connection with Reggie at all. But maybe, just maybe, our being present with each other had been enough. Maybe in those meetings over saltines and strawberry jelly, his hope for connection had in some small way been met. I hope so.