Fix me

I heard her complaints from the other side of the curtain in our shared hospital room: “I wish someone could pick me up and put me into a spot where I’m comfortable.” Her rants went on and on. “I won’t eat until my stomach clears out. I feel so impacted. I’m in pain.”

At times she sounded condescending. “You don’t understand,” she’d say to her nurses and aides as she refused medications, foods, drink, and treatments they offered that might ease her condition. Other times she was simply angry, augmenting her stubborn refusals by chastising everyone who tried for failing to help her. Too weak and sore to move herself into a comfortable position, she begged over and over, “Please help me sit up, just once more.” But then she’d scream, “You’re hurting me. You’re not doing it right.”

There’s not much in this world worse than constipation; unless it’s someone else’s constipation. There in the next bed, separated from me by a thin curtain, she bargained continually, whining, complaining, promising to be good if someone would only help her. “I can’t,” she whined over and over, and almost at the same time, “Help me.” Is she really saying, “Do it for me”?

“I can’t; I can’t. You try to feed me and I can’t eat. I Don’t. Want. Anything.”

Her private nurse attendant tells her she has to eat if she wants to eliminate. And she needs to eliminate if she wants to go home.

“I don’t want to go home,” she yells. “I want someone to hold my hand,” I hear her say under her breath. “Why won’t they just leave me alone?! Can someone please tell me why they won’t leave me alone?”

I’d been listening to this all day and watching the nurses scurry reluctantly in and out in response to her buzzer-ringing and hollering. They’d do their job perfunctorily and leave as soon as possible; which only made her more angry and ornery and abusive. I could no longer remain silent. I untwisted my IV line, pulled the pole along behind me and stepped behind the curtain.

“I’ll tell you why they won’t leave you alone. You’re in a hospital. It’s their job to try to get you better. And if they can’t make you better, they try to make you more comfortable. But you have been very resistant to their help, which only makes them want to get away from you. If you’re going to get more comfortable, you have to participate to make it happen.”

This is the first time I’d gotten a look at this woman all day. She is gaunt, emaciated, worn out, used up. Her belly is hugely distended. She embodies my memories of cancer from childhood, when “cancer” was one disease and it invariably ended in death. Initially her eyes were downcast and lifeless, with a heavy touch of guilt. She knows she's made my hospital stay less than pleasant; she's made frequent remarks how embarrassed she is about what the person in the next bed must think of her. Now I'm standing in front of her and maybe I'm going to dish her anger back at her.

“Your best bet is to go along with the program here, then get yourself home where you’ll be in a better position to be left alone. Have you looked into hospice?”

“No,” she said, “what’s that?”

I told her the little I know, which is that a person can have care in-home or in-facility, care aimed at making patients comfortable at end-of-life. She could probably get more information from the nurses.

She opened her eyes and looked at me directly. I’d dared to talk about her death.

“This is not fair,” she opened up. “Look at me. My stomach hurts. I can’t sit up. I can’t lie down. I can’t eat. I can’t get comfortable. I’m scared.”

“I understand ‘scared’,” I commiserated, “I have cancer too. But you’re going to have to stop saying ‘can’t’. No one wants to do anything for you if you don’t make an effort to find things that work. You have to let them know what you want and you have to let them try to provide it.”

“You’re right, it’s not fair,” I continued, “But it’s what is. There are a lot of things that aren’t fair.” And I related the story of the man who was struck by a car and killed in my hometown while walking on the sidewalk this past summer.

“I’m not afraid of death,” she said. “What scares me is what I leave behind. It’s having people see me this way, my daughters, their babies. I don’t want them to see me and remember me this way. It’s humiliating.”

“I understand. But you have to remember that what’s particularly unfair about death is that it robs the people left behind of someone they love. If you refuse to see them now, you’re taking away an opportunity for them to see you and love you and connect with you while you’re still alive. It’s awful to lose your mother. Let them have you while you’re still here… for them.”

I hadn’t wanted to touch this woman. Her appearance was scary, her demeanor hostile, hurtful, demanding, unforgiving. But she was looking at me directly through most of this interchange. I’d connected with her and I could see she appreciated it. She motioned for me to sit on her bed and reached out for my hand. We sat there, holding hands and understanding what it means to be in the cancer club.