By Maggie Finley, MAPS, BCC
“…in breaking bread”
What follows is my personal reflection on a patient narrative that I believe points not only to the subtle differences in acute care and hospice chaplaincy, but also mines the intent behind its Latin root hospes – to welcome strangers and tend to soul-weary travelers. Naturally, contemporary hospice models invoke Elisabeth Kubler-Rossʼs revised, if not entirely new, philosophy to enlarge the hospice context beyond limitations of a fixed place to include the patient’s own home, which tests the tensile strength of a chaplain’s creativity in responding to patient needs.
For me, this story is even more than that. It is testimony to the fact that as chaplains we’re often touched deeply by our patients in ways they can’t possibly imagine; how precious is the access and intimacy hospice chaplaincy often affords. It is also a kind of Everyman story, speaking to what may be true for many strangers among us – how complex and fragile the immigrant existence is, living in diaspora; subject to influences from both within and outside the community.
I will call my patient “Rafik Najan,” his wife, “Jasmine,” his sons “Ismael,” “Asim” and “Jamal.” Rafik’s hospice experience unfolded over about two months’ time. He and his wife were prayerful, yet non-observant, and as such attracted unwelcome attention from Seattle’s larger Muslim community. The Najans’ efforts to maintain privacy and autonomy heightened when they returned to the United States from Afghanistan in 2003. The war in Afghanistan dashed their hopes of staying in Kabul to raise the children. Jasmine was confronted with the difference in gender roles and expectations. And although she deferred to her husband in the privacy of their home, she partnered in running his printing business. In Kabul, she was merely property, and she reported suffering cruelly at the hands of her husband’s extended traditional/tribal family. She still feared reprisals based on community censure in reports back to Rafik’s elder brother and mother. Jasmine shared openly with me her desperation: how if money were not an issue, she would prefer living in Pakistan. At the time, she understood it to be a safer haven and believed she could make a home under somewhat less scrutiny. The couple’s printing business survived the hit from emerging software technologies only to be broadsided by the cost of Rafik’s cancer treatment. Once diagnosed, communal threats were made to take away the children.
I witnessed Jasmine go about her chores under the watchful eye of an elder woman who inserted herself into their lives. This woman came unannounced almost daily, planting herself in the couple’s living room to lobby for her son’s adoption of the Najan children. Jasmine endured the humiliation and blatant disregard for the sanctity of her space. She drew me aside to register her disgust and exasperation. But it took time, humility, careful attention and open-heartedness for trust and intimacy to grow between us. It took psychic energy to be understood and to understand and a lot of reframing and clarification to negotiate linguistic and conceptual barriers.
Symbolically, to step into the Najan home was not only to enter sacred space, but also to some degree to go back in time. Leaving my shoes at the door was simultaneously about checking my cultural expectations there, too. Once inside, I saw a great room ringed with sofas, virtually free of decoration (the Islamic way). Small area rugs covered the floor. Concessions to the West, at least visually, were large TV consoles – one in the family room, another in the boys’ rooms with Nintendo. It was a matter of time before I was ushered into the bedrooms, which seemed analogous to the nuanced stages of our therapeutic relationship.
Initially, we met in the front of the house. A wonderfully pivotal moment came when I stood outside the screened door, pleasantly surprised by Rafik’s waving me in. I had barely cleared the threshold, when he gestured I should sit. We exchanged perfunctory greetings as his wife materialized with a platter from which he mimed I was to take bread and dip it as he had. To decline was not an option. Neither of them could possibly know the impact this had on me: to sit on rugs and break bread together was to reenact our shared heritage of a 2,000-year-old ritual meal. Rafik’s gesture signaled an invitation into his home, his sanctuary – his present reality. It was the first and last time I’d see him in a festive mood. Within days he was bedridden and too weak to sit up.
It was in the kitchen that Jasmine’s heartfelt struggles and dreams came to light. I was reminded of author Anita Diamant’s “The Red Tent” and how feminine relationships find a way to flourish in ritual seclusion. Ismael, Ramin and Jamal played around the table while we women talked. Eventually, over cups of homemade chai or saffron yoghurt, Jasmine disclosed her plans for further education. Swallowing bitter tears, she spoke of starting a daycare. She could not envision how to support a family. I couldnʼt either, but I listened. And I was struck by the quiet strength it took to push through the daily sadness that was hers. It remained a situation in which I knew in my bones I could do nothing except open my self, pay attention, and hold the center with this woman whose needs were so fundamental, yet so complex.
I won’t forget the transformative moments – the little meals that spoke to me of Communion. Nor will I forget how Jasmine so freely gave from the precious little she had. I won’t forget the three spare, private encounters I had with Rafik, when he simply and poignantly disclosed how years ago he had been disaffected from Islam while clinging to Allah. He tried always to be a good man, never convinced he was good enough. He waxed poetic, sometimes philosophic and often pragmatic about the imminence of death, referencing sacred truths we share as “people of the book,” totally undone in the moments when the enormity of grief overtook him. How could he wrap his mind around a future of not being here for his sons; not caring for or protecting his family “as a man should”? Not surprisingly, his greatest fear was of being forgotten. He pierced the fragile silence whispering weakly into the air around us “this is how it is.” He grasped the irony of wanting to see his Afghan home, eclipsed instead by the encroaching mystery of simply going home. Meanwhile, his wife fixated on providing a funeral worthy of the respectable Muslim man he was, in spite of insufficient funds. Rafik’s former business partner accomplished this much. Jasmine was skeptical of him, wondering whether he had given her reliable information on any assets. As a woman, she had been excluded from full disclosure.
The boys ranged from 6-13 years of age. Both parents worried they would forget what life was like before cancer. Going against religious norms, Jasmine pinned up family photos in the boys’ rooms. That so much had been lost was made evident by the smiling faces suspended in time. Each boy coped in his own way with grief. Jamal, the youngest, got in my face to announce with the bravado only children have, “I don’t want him to die. And I pray to Allah he will not.” A couple of weeks prior to Rafik’s death, forced to limit play and keep noise down, the boys angrily defied their mother’s attempts at discipline. Their anger was stunningly appropriate, but I couldn’t help wonder what the future held: how well would they respond to their mother as head of household.
I end as I began, mindful of how moved and subtly transformed I was, as were other members of the care team, by walking with the Najans. Shortly after Rafik’s funeral, our social worker voiced what the rest of us were only thinking: Had our tender caregiving been “just a drop of water in an ocean of hardship and grief?” In the silence of my own thoughts, I acknowledged the perpetual challenge of walking with the poor stranger, the immigrant. Then, deep down I heard words whispered with a familiar ring – sometimes, “this is how it is.” I have to believe sometimes to be present is enough.
Maggie Finley, newly retired hospice chaplain, ministered for seven years at Providence Hospice of Seattle in Seattle, WA. She served patients throughout King and parts of Snohomish Counties. Providence is a non-residential hospice, so she visited patients and families in their homes, skilled nursing facilities, assisted living residences, and occasionally in hospital settings. Currently she is a chaplain consultant and member of the Professional Advisory Group for Spiritual Care and CPE Program at Swedish Hospital in Seattle, WA.