Arc

We tend to think literature has an artificial structure that separates it from how real-life interactions go. But what happens during my visits as a hospice chaplain can have just as much of a “narrative thread” as any short story, with an arc that goes from building a connection with each other (the background), to pent-up emotion let free (the climax), to a peaceful aftermath (the resolution).

Why just yesterday I saw the patient Isabel (all names are aliases), relatively young in her mid-sixties, and her mother Gloria, fervently devout Christians originally from Cuba. Gloria and I began with greeting each other and some small talk, all tinged with a resigned air as we entered the bedroom and she gestured to her daughter lying in bed. Isabel dreamily opened her eyes, wanting the respite of prayer and song. Isabel encouraged me to keep going: “my eyes are closed, but I still am listening.” I had started with some traditional prayers, and some simple hymns. I felt the calmness in the bedroom, decorated with so many religious pictures they practically could count as wallpaper. The daughter was riding on the warm current of the comforting religious words and music. The mother was letting herself feel their message of peace. I paused, and Gloria let a memory rise out of her: “Even when Isabel was a child, she wanted to go to church. Every day she went to church. Both of us went. Every single day. When we were in [she names a place in the U.S.].” As she remarked on that, I pondered how her faith contrasted with  the Cuban government’s discouragement of religious expression. This much was, so to speak, Chapter One.

After a moment of quiet, I said I would offer some  “more modern” prayers, a shift to Chapter Two as it were. I recited a “prayer for caregivers” and “a prayer for the sick.”  It was then that Gloria’s emotions bloomed and she let her tears be released, the most intense moment of the visit. I said God was receiving her sacred tears. Perhaps for her these were tears of acceptance of Isabel’s fate, because during  my previous visit, anger was the emotion that took center stage. As I said goodbye to them, the mother asked me to bring copies of those modern prayers next time. Isabel acknowledged my departure with an opened eye, closing the third and last chapter of this human interest story.

I Was Stumped

Tammy (a pseudonym) was an African American and very young. Very young to be on hospice that is. This new patient  immediately took notice when I entered her room. I peeked in to see if she’d like to partake in some conversation. She was in bed and I drew up a chair. About the first thing she brought up was her quest for honesty. “You know, people they keep asking me how I deal with having cancer like I can beat it and all. There is no cure, I tell ‘em, and I –am– dying. You hear that? The doctors they lie and tell me about cures but I know that isn’t so. I just go with the  flow of each day and I accept it.” She then addressed how repugnant pity has been for her and introduced it with the same opener: “My friends say, oh, you have cancer, how can you deal with it. I tell them I don’t want their  pity. “

After I affirmed her feelings and opinions, and reaffirmed them a few times more for good measure, the visit was getting to be much longer than average for a hospice patient. I had been there close to an hour and she still had the energy to talk, despite nausea.

When I am not sure how long to stay, it is tricky to negotiate the length of a visit. Are they getting tired from the effort of interacting? Do they want some privacy? Are they just being polite by not letting me know it is time for me to go? There are plenty of polite ways for them to signal this. A patient often says something like “Thanks for coming” and I get the idea alright. Or they start to close their eyes, or tell me they need to rest. But if I bring up leaving before they do, I run the risk that they will  think I myself am the one who is getting tired or upset by what they are telling me, or that what I am doing is “just a job” and  am only concerned with having to get my quota of patients done for the day. So it is a tricky balancing act between leaving prematurely with the patient thinking I am rushed or not interested, versus overstaying and imposing on that patient.  This is the chaplain’s version of skirting the “damned if you do damned if you don’t” scenario. Nurses and social workers do not wrestle with this problem as much because they have an agenda of things that must be done or asked and it is less ambiguous when they are finished.

As I was saying, the visit was turning into a long one, so I asked Tammy whether she would like me to stay some more, and this is where communication went awry. She said, “That’s your decision, not mine.”

“Um mine?” (I thought about how I like to give the patient, who has so little control, at least some choice regarding when and whether I should visit and for how long.)

Tammy propped herself up in the bed to talk more emphatically: “You, not me, decide to stay with me. You’re the one to decide if you are going to visit me again.” Many possibilities flooded my mind. Was she challenging how sincere I was about wanting to stay and wanting to visit in  general?  She did, earlier in the visit, pointedly ask me why I do this kind of work. Was she questioning my motivations for visiting and the role I was playing of being the helper vs. the one being helped?  Did she feel besides my being in the “superior” role as the helper that  I was treating her as even more unequal because she is an African American ? (That is, there is automatically a power differential between me and my patients because they are sick and I as a professional am healthy, which I write about in Encountering The Edge.) Did she feel I was the one to decide if she were “worthy” of my attention? Did she really want me to take control? After a few rounds of my assuring her she was the one who could decide and her telling me no I was the one, I then tried out, “I think you and I should decide together.” That did not satisfy in the end either, and she went back to telling me to choose what to do. Finally I dropped it after assuring her I would see her again, because I could not figure out what was going on and I did not want to distress her. Because she was religious, I switched gears and told her I could sing hymns. She perked up at that idea, and I sang “He’s Got the Whole Wide World in His Hands.” After  I and then both of us sang together, she said, “Now I’m getting into the spirit of this.” Thus the visit began and finished on track, but the middle was dicey. Assuming Tammy was clear-headed, what do you, O Reader, think was going on?

On the Other Side of the Bed

It’s not like being a hospice worker gives you extra protection from death. Some time ago, a recently retired hospice nurse became one of my patients. Her colleagues from her former place of employment were in the room during one of my visits there. They were chatting away about this or that approach to treatments for her discomfort, and she responded as if she were part of an impromptu interdisciplinary team meeting. Perhaps she felt almost like she had gone back to work, excepting the technical detail that the object of the discussion was  herself.

What was it like for her to be on the other side of the bed so to speak? How did her years of experience being on a first-name basis with death influence how she looked upon her own upcoming rendezvous with it? One way to find out was to ask her. But would curiosity kill the chaplain? Would she chew me out? I took my chances, because as I conversed with this cheerful woman, I sensed she half believed her new status was just a role play. (Training in our profession includes role playing that we are patients.) I asked, “How is it different going from being a hospice nurse to a hospice patient?”

Chuckling as if to humor me with some more play acting, she replied, “I now view all the people I know, all the people in the world, with more compassion.” Hard to resist printing such a lovely and thought-provoking response in a blog called offbeat compassion.

Feeling compassion as we take sorrowful leave takings in our lives is a way to prolong the vividness and “here-ness” of what we are departing from. It softens the final cutting way from those things, people and experiences that we must relinquish through choice or, at least in the final instance, through necessity. Her answer is yet another reminder that we can still access this loving feeling  and enhance the here and now way before we must book passage for elsewhere.

Connections Across Spiritual Lines

There may be more questions per capita among the populace of Montclair, NJ than most anywhere. I did not have to say much about hospice and about my career memoir at the public library before their questions gained release after who knows how long a painful incubation. Someone finally said, himself fully sated from hearing so many, “It’s time to move on.” By then the program was almost finished. One of the more challenging questions was, “Isn’t there a disconnect for you as a rabbi to be mostly serving Catholic patients now?”  I had told the group that one reason my current employer hired me was because I could speak Spanish, and that most of my Spanish-speaking clients are Catholics.

A disconnect. In other words, alienation of some kind. I have never thought of my work with non-Jewish patients in that way, including atheists. Connection is fundamentally what a healing spirituality is all about. It is also what drives me to continue trying to reach patients and their families and build trust no matter how great our superficial differences. Impending death has a way of often getting people to dive beneath the surface and see the essences we can bring to each other. We all suffer. We all seek meaning and answers and love. We all traverse the path from birth to death in the same Universe.

I am very moved when someone with a markedly different background welcomes me into their home and into their most private thoughts. Some time ago, the lesbian partner of a patient described the intimacies of their relationship such as calling out the name of their loved one when she was in another room because she wanted to know exactly where she was. I felt a common bond as I thought about how my husband and I do the very same thing! Recently in this blog I wrote about the way a Nigerian nun and I have connected through our mutual fascination with each other as women of the cloth.

It is true that when I am with a Jewish patient, it takes less guesswork to find things in common. Jewish patients can take comfort from knowing that we are both “members of the tribe” and that there will be no awkward jockeying between us about how to  give and receive care without elements that may seem foreign, i.e., not Jewish. It also is so much easier to pray when asked, because there are many prayers I know by heart, and many sacred melodies too.

On the other hand, there are some elements at play that can make spiritual support harder to provide the more similar the patient is to me. A Jewish patient may feel guilty in the presence of a rabbi because of their self-evaluation of not having been a good Jew. But when I am with a lapsed Catholic for example, they may feel free to unburden themselves regarding why they have come to feel a disconnect with the Catholic Church or with priests. They can talk freely without worrying that I will judge them for not regularly attending Mass.

Any questions?

A Meeting of Two Exotics

Imagine I was visiting you and from your curiosity you found out that that I am a Spanish-speaking female rabbi that has lived in Japan. You might think I was rather exotic. Earlier this year I met my match.  I went to see a small community of Nigerian nuns, whose convent was a modest apartment on a modest street. They were all wearing royal blue habits, except the patient, who was wearing a native dress as varied in hue as Joseph’s coat of many colors. One of the nuns, as if eager to exhibit to me how she was the exotic one, said to me, “Do you find it threatening to be visiting us? We are nuns, and we are from Nigeria. Were you nervous about what you might find?”

“Threatened? No not threatened. But I must admit I’m fascinated and very curious.” As I answered, I wondered why she thought they might seem threatening. If anything, it felt like a very safe, sacred and peaceful place to be. I went on to say, “And besides, we’re colleagues.” She nodded happily and I continued, “Also, I have met many kinds of people from many cultures and ways of life; I have traveled to over 20 countries and lived in a few. I’ve been around the block, and am not young.”

Usually as a chaplain I tend not to talk much, so I must ask myself why I went on like that. I think because I did not want the nuns to think I was uncomfortable, which would result in their discomfort. But more than that, I yearned to communicate how feeling threatened was so much the opposite of what I felt. Here is a group of women whose spirituality is at the top of their list, and who are in pursuit of meaningful lives. As white married, financially secure, Jewish and as American as I am, I too try to put spirituality at the top of my list and pursue meaningful moments. See that? We have plenty in common.

I was darn curious, though. I could not resist asking why they were here. Doesn’t Nigeria need the services of nuns? She gave me a startling answer: “We are here to help American blacks.”  Help Americans? She went on to say something like, black people are not trusting of whites and they need Africans to look up to.

All those years ago slave traders forced Africans to leave their homes and come to the U.S. Here we have Africans voluntarily braving our culture, including our freezing weather, to offer redemptive routes to those slaves’ descendants. I am honored to have met those engaged in such a sacred task. I am humbled that they are the ones doing it, as we whites have failed to repair the damage we have inflicted on African Americans since slavery through the present. Much less have we enhanced their spiritual well being.

An Answer That Stopped Me Short

A good way to trash one’s assumptions on a regular basis is to work for hospice. I asked the brother of a new patient recently how many brothers and sisters he had. He paused and said,

“I’m not sure….about 19.”

Me: “’About 19?’” [I thought to myself. How could he not be sure? How could it be that many? I then paused, which made him realize his answer needed some elaboration. Or to put it differently, I needed some education.]

The brother: “I mean that’s how many are from my father.” [He also mentioned a small country they are from.]

I gave a long “ohhh,” laden with an I-get-it-now intonation. But I was not sure I fully did. Not wanting to burden him with more questions and my ignorance, I went on to my usual offer to provide spiritual care. Afterwards, I fell to musing what it would be like to be in a family that had give-or-take 19 sibs. Keeping track of birthday celebrations could get complicated. (Just kidding.)

Despite my extensive exposure to many cultures throughout my life through teaching English as a Second Language and having lived in foreign countries including Japan, Colombia and El Salvador, my assumptions about such basic things as family persist, such as knowing all of one’s siblings fairly well even if estranged, and fitting all of one’s family members into neat categories. This conversation reminded me that I continue to have an image of a white, middle class American-born family in my mind when I meet new people.

At least I do not assume an individual is straight. In fact I was delighted to see a new symbol in our documentation drop-down menu, “PAR,” that indicates when the primary caregiver of the patient is their partner. Like laws, documentation regulations eventually catch up to reality.

As a chaplain, I encounter people from so many countries and socio-economic backgrounds and races, so it is not possible to keep in mind all the differences there might be between them and me. What to do? We in the helping professions can’t continually keep every variation in mind. All we need is one assumption: assume that at any time we will have to revise our assumptions in the heat of the moment. Through being alert to our own instant sensitivity training, we will become more and more a part of the human family.

Death of the Hospice Chaplain Profession?

Off the record, a colleague of mine with decades of hospice experience predicted to me that the government would eventually get rid of the requirement that hospices hire chaplains. This particularly caught me off guard because I had just procured such a position with Center for Hope Hospice in Elizabeth, NJ. He elaborated that “the government wants to save money. They say America is becoming more secularized anyway, and so chaplains aren’t needed all that much.”

Not that my shiny new job offer was about to vanish and “go gentle into that good night,” but I was nettled by the government’s alleged viewpoint. We are the lonely profession, wanting to weep with frustration that “nobody understands us!” Picture yourself as a patient. When a health professional comes to you, it is usually centered around some task to perform, some agenda on their part. To give you meds. To ask you about family dynamics. To find out your food preferences. When a chaplain appears, if they are doing their job well, they are doing no particular job. As agendaless as possible, they wait to see whatever it is you care to bring to the fore, anything from “I don’t want to see a chaplain” to “This is what my life has been about” to “Why am I still here?” to “I’m ready to let go but my daughter isn’t” to simply sharing some spiritually-charged quiet as rain pelts the bedroom window and a heater clangs out its protest.

The government, with plenty of agendas to go around, shies away from moments that elude definition….and people that elude definition, well, you know, such as chaplains.

Meanwhile chaplain organizations exhort chaplains to perform research that proves that having us as part of the healthcare team makes for better health care “outcomes.” This is a fear reaction, that yes, chaplains might very well be dispensed with. We better prove that our encounters have a quantifiable effect. Too bad that society cannot take it on faith that some ineffable good arises out of an “I-Thou” relationship between the patient and the chaplain.

And secularization? That is beside the point. It is a rare offer when someone is willing to cede some of their comfortable space to you and dwell in your land of suffering no matter how brief the sojourn.