Maliwatt, or “Watt” as he asked to be called, was born in Cambodia. After the Viet Nam War he came to the United States and settled in Arizona. Thirty years later, diagnosed with lung cancer and having no reason to stay in Arizona, he boarded a Greyhound bus headed for Washington, DC, to apply for travel documents to France where his brother lives.
But getting off the bus at the terminal, Watt collapsed and woke up in the hospital under a full-face oxygen mask. The cancer was farther advanced than he had realized. He was not going to make it to Paris. Instead he was facing discharge from the hospital with no money, no place to go, and no one to turn to. Hearing about Watt’s circumstances from the hospital social worker, Priscilla, our nurse case manager, set aside what she was doing and drove over to meet him. The next day Watt arrived at Joseph’s House by ambulance.
He was a handsome man in his early 60’s. He spoke English fluently, but talking exhausted him, and most of the time Watt lay on the bed nearly motionless, the oxygen mask obscuring his face.
Watt didn’t ask for anything, not even pain medication. We brought him something to drink; we brought him hot face towels; we offered him medication for pain.
He thanked us briefly and politely, motioning us to place it on the bedside table — where it stayed, untouched. Several days passed. Watt now accepted liquid morphine when it was offered but never requested it. Turned on his side, he lay facing the wall, his back to us. The oxygen machine hummed too loudly. Watt appeared to be holding himself still.
We kept the door part way open. There was something about him that riveted our attention. All of us wanted to be with Watt in his room. Yet most of the time when we were there, we were uncomfortable because he seemed to need or want so little from us.
The morning after he died some of us lingered at the table after breakfast and spoke about our short time with Watt. It had been exactly eight days. Priscilla admitted that every time she had gone into — or even passed by — his room, she had a knot in her stomach. She experienced a sense of helplessness with Watt into a vague sense of failure. She had been sitting with Watt just hours before his death when she had allowed her hand to rest lightly over his. Sometime later, he woke up and snatched his hand away, crossing his arms over his chest. “I couldn’t connect,” she said. “I was unable to create a relationship with Watt, at least as I understand relationship. I couldn’t satisfy my need to help him.”
Hospice physician, Dr. Michael Kearney writes of something like this in his book, Mortally Wounded. Struggling to tell the story of a man in his care who could not be comforted, Dr. Kearney writes, “What is it in me that does not find it easy to remember, let alone tell, this sad story? I believe it is my wounded heroic pride. . .the (pride of the) hero who failed in his task to ‘make it all better.”’ We caregivers feel pain too, when we feel helpless to help someone we care for.
Priscilla spoke of how different her feelings were for Ferwoni, who is also very Ferwoni, neither speaks nor understands English. Not only have we no common language with her, there is also no clear response from her of any kind. But because Ferwoni is completely bed-bound, there is much to do “to help”. She needs to be changed, bathed and turned. When we brush her hair, she stretches her neck and seems to enjoy it. We communicate our care through our touch. “When I’m helping”, Priscilla said, “I feel good about myself. Actually, of course, that’s when I’m more in control. ‘Helping puts me at ease. I hope the time will come when I can love without any conditions at all, even without the reward of ‘relationship.’ I know it will take spiritual discipline and practice.”
“And grace,” said Helen. I suspect Helen’s tone encouraged Priscilla to say more.
“It is real growth for me”, she said, “to be able to accept even the parts of me that love conditionally. In the past, I wouldn’t have been able to embrace those parts of myself that feel helpless or like a failure…like having to have a reward for loving. But of course, all of it’s the real me. I’m learning to accept those limitations and that feels like growth! I feel a certain level of freedom, a breadth, a looseness. Actually, it’s exciting.”
The table was quiet. Initially, I suppose, we were almost shocked. Priscilla has been a hospice nurse for many years; she cares sensitively and lovingly for everyone who lives at Joseph’s House. And here she was talking about her own need for reward if she was to love Watt. Priscilla’s words had shone a light into each of our souls.
Helen – a retired nurse who volunteers at Joseph’s House two days a week — entered the conversation. “I found myself wondering about Watt,” she said. “What was his story? How did he come to the U.S.? What side of the war had he been on? Maybe, if I’m honest with myself, I wanted to be able to judge him. Had he been friend or foe? Maybe I wanted to spin my story about the war onto Watt’s story. But what did it matter? All we had were eight days with Watt, and all we were given was the opportunity to be present to him just as he was, face turned to the wall.” a
Angie commented that the atmosphere in Watt’s room was at times so thick you could cut it with a knife. “I don’t know what to call it.”
“Tension?” I asked. I had felt it too. After listening to Priscilla and Helen, I was wishing, not that anything had been different with Watt but that something had been different in me. Maybe, if I had been more aware of the tension I was feeling with him, it could have guided me. Maybe I could have relaxed my grip and softened the part of the tension in the room that was coming from me. It is humbling to recognize now how unconscious I was of my fear of Watt’s way of dying his own death and how much that unconsciousness contributed to the thick atmosphere when I was in his room.
But not all members of the community struggle at the same time in the same way. Where some are struggling, others will have already discovered a softer way.
Angie came to Joseph’s House three years ago and she still works at the House while going to Wesley Seminary. Angie remembered the Sunday afternoon a few days before Watt’s death when he reminisced with her about persimmons! He remembered in detail the deliciousness of persimmons, how, as a child, he crunched into them like apples. “In this house of urgent needs,” Angie said, “the most urgent need that afternoon was to find Watt some persimmons.” The local Safeway didn’t have any.
Angie called Whole Foods – yes, they had persimmons – three! Maggie, a volunteer, drove there and bought them all. They found a pretty bowl for the fruit and took it up to Watt’s room. He nodded his thanks and took the small paring knife, showing them how to cut up the fruit. Then he insisted that they take some before he took a small piece, lifted his oxygen mask, and put it in his mouth to savor it. That night, Angie said, she went home and wept.
The gift of community is that it becomes a container for introspection and growth and healing. We notice what feels uncomfortable when we care for Watt as best we know how. We wonder about our discomfort, talk about it. We recognize that it might have been possible to have followed his lead. As our knowledge of ourselves deepens, especially as we are able to recognize and even embrace our shadows, we become less encumbered and more whole, able to love with fewer conditions. The work we do here is about losing our illusions. . .so that we can maintain our humanity.
What we learn from those who come to Joseph’s House isn’t really what we take from their stories: not the drama, not even the incredible suffering and coming through. The learning happens when we are able to bring our whole selves simply to be with this person: here; now. Our life and work at Joseph’s House is about a kind of wholeness — wholesomeness, if you like. It’s subtle, I suppose. But it’s what people feel when they come in the door.