Twenty-five years ago I worked as a spiritual counselor in a hospice program that no longer exists. I provided spiritual counseling to patients, family and staff in this home-based hospice program. Most people are considered “terminally ill” when their doctors estimate they have six months or less to live. Sometimes people live longer than six months—nine and even twelve. When people live past their estimated time, it usually has more to do with their spirits and minds than it does their bodies.
I loved my job title “spiritual counselor” precisely because it was so ambiguous and broad. The title allowed me to talk with people of all religions or no religion. The title “chaplain” usually scared the hell out of people which I suppose is convenient if you’re afraid of going there. I had several patients who told me they always thought a chaplain was a Bible-thumping maniac intent on converting people. They were glad I wasn’t one. Sometimes people misheard “spiritual counselor” and thought I was the “special counselor,” or the “cheerful counselor.” All good with me.
This is a series of posts about two women, well, actually three, counting me. I’ve never known two women more different in their living and dying than Pami and Crystal. Nor had I met two women who had such a great effect on my life in such a short period of time.
Pami was 38 years-old when she was told that there was no further treatment for her cancer—spinal chordoma, a tumor on her spinal cord. Her son Paul was four at the time, and Pami’s vow was to live to see him turn eight.
Everybody at the hospice team meeting shook their heads when her nurse mentioned that Pami was talking about Paul’s eighth birthday. “She’ll never see it,” her nurse said. “I just can’t make her understand that she’s dying.”
Pami was a teeny, tiny Vietnamese woman. Her usual dress size was a petite 0. She had a huge smile, and thick, shiny black hair cut in a page boy. She had been in the Hospice program for almost two years before she finally consented to see me. Two years is a long time to be terminally ill—it defies the very definition.
The main reason Pami didn’t want to see me was that she didn’t feel a need for more spiritual support. She was a devout Catholic, had Holy Communion brought to her weekly, and had a priest friend who came from Rome once or twice a year to do Mass in her home.
She didn’t take a lot of pain medication. Other patients with less serious problems were taking twice the dose she would take. Pami told the nurses that when she became uncomfortable she would pray and lift up her pain to God. When the nurses told me this, I said, “Well, maybe she doesn’t need more spiritual support.”
But her refusal to take the prescribed dose of pain medication drove the nurses crazy, even though we all knew that it was impossible to really understand another’s pain. We use the pain scale of one to ten, ten being excruciating and one being none. But I have heard one person call a hangnail a “ten,” and others say that their bone cancer pain was a “five.” It’s totally personal, and unless you can be inside someone else’s skin, you can’t really say. That goes for emotional pain too. But I’ll get to that when I tell you about Crystal.
I never saw Pami standing. This is amazing to me since this was a big topic of conversation among the hospice staff. Pami would force herself to stand and even walk for a few steps until the pain became too much for her. She felt that if she didn’t force herself to keep moving she would lose the mobility in her legs. Alison, one of the hospice aides, said it was hard to watch, but Pami just wouldn’t give up. She wanted to keep going as long as possible.
Whenever I came to visit she was sitting in a cream-colored recliner chair. She wore loose sweat clothes which managed to conceal the bag connected to her colon, the tubes coming from her kidneys, and the tumor that was growing inside her pelvis.
At first it was a little awkward for me—what to say to a woman who was in constant conversation with God? Past experience with Catholics showed me that I didn’t have much credibility as an ordained, Protestant woman. What could I possibly offer her? So mainly I listened to her talk in heavily accented English.
She told me how her father was imprisoned in Vietnam for ten and a half years, and how during that time her mother raised pigs and chickens to provide for her eight children. Pami tried to escape from Vietnam five times and succeeded on the sixth by pretending that she was part of a singing group going to entertain troops in Cambodia.
“I was so scared. So scared,” she said.
“Were you afraid they would shoot you?”
“Oh, no. Afraid they would ask me to sing! I know nothing about music.”
She finally made it into Thailand by concealing herself behind a cow as it pulled a wagon. Then she ran over the Cambodia/Thailand border into a Red Cross hospital.
Her house was immaculate and there was always an electric rice cooker going filled with hot steaming rice. Sometimes we talked about food, what she ate, what she drank. Other times I listened to her talk about how the tumor pressed on her sciatic nerve, or caused her bladder to spasm. And we talked about God. I personally think of “God” as “Spirit” to avoid the male image, but I go with whatever word the other person likes to use. So with Pami it was God.
“I have a conversation with God going all the time,” she said. “Whatever is on my mind—if I wake up in the middle of the night, I tell it to God.” She said it matter-of-factly in the same way I would report a phone conversation with my sister. “Then I read my Bible and pray on it.”
Of course. I wanted to nod and say, “Oh, yeah, me too,” but the truth was that I was more likely to get up for a bowl of Cherry Garcia and flip through Vogue.
Pami’s recliner was intentionally placed next to a huge window in the living room. Directly outside the window was a busy street, but further out in the distance she could see rolling hills. It was a fantastic view depending on where you focused your vision. This was the secret to her happiness: she focused her life on the positive and pretty much ignored the rest. It wasn’t that she was never sad, or depressed or angry—she just didn’t stay focused on any of those things.
I haven’t mentioned her husband Dave because it was a year before I saw him. He too, escaped from Vietnam, and later met Pami in the States. He was so quiet and shy, he winced when I said hello. He was an engineer, very smart and adored Pami, but as Pami herself said somewhat apologetically, “Dave doesn’t talk.”
Paul was another story. He was outgoing and energetic as only a six year-old boy can be. The first time I met him, he wasted no time in showing me his books and his homework and talking to me about school. He had big sparkling brown eyes, and Pami’s shiny black hair and huge grin. When Paul came home from school in the afternoon, it was like having a rocket go off in the living room. He’d zing around the house, getting a drink, getting a snack, putting away his school books, showing me his fish.
“Pauly, Pauly,” Pami would say in a gentle voice, “Debra and I are talking now.” Pami had a talk with him telling him that when I visited he could say hello, but then he had to let Pami and me have our time together.
“How is he dealing with your illness?” I asked.
“He knows and understands that I will die from this, but he also knows that I will always be with him. He told me that when I die he will get a plant and take care of it, just like he takes care of me. He is not afraid.”
I didn’t just sit there and nod when she told me this. Tears trickled down my face and I dug in my purse for a tissue.
I offered to pray with her on my initial visit and she eagerly accepted. We Protestants don’t consider Mary a major player and usually leave her on the bench. Pami was Catholic and I knew she considered Mary to be her designated hitter. But praying in Mary’s name or to Mary felt super awkward to me.
“We pray in the name of the Creator, the Son, and the Holy Spirit. Amen,” I said. I hesitantly opened my eyes. Pami smiled and squeezed my hand. After that I always prayed on the end of my visit. Sometimes Paul would get home before I left and he held hands with us as I prayed. No one ever complained that I left Mary in the dugout.