Folk Philosopher

Ricky, who designed and painted parts for rare cars and motorcycles, proclaimed: “I’m gonna drop dead in two months.” That is how he opened the conversation when I met him for the first time as my patient. Talk about cutting to the chase! Quickly adjusting gears from an opening greeting to this steep fall in topic, I asked if he was afraid of death. He replied, “I am not afraid of things I can’t change. I’m only afraid of things I could change but I don’t.” Ricky was not able to elaborate. He moved off to the relatively lighter topic of the motorcycle he built for himself and decorated by himself but would now have to sell (for obvious reasons).  Maybe he meant by his remark that he was afraid of living with guilt and regrets. Or maybe he meant he kept doing things that made him unhappy.

I can only speculate, but what grabbed my attention was that Ricky feared dealing with choices more than dealing with fate. Usually it is the reverse for most of us, is it not?  Perhaps for him, uncertainty and lack of confidence to better himself was scarier than the certainty of his fate. Can’t control it? Then no responsibility for what happens. There is just sweet surrender.

Maybe a small part of us in some remote corner of the psyche can admit to identifying with Ricky. We can be passive about certain things. Perhaps what we really fear is having less and less control over doing a given thing differently because we have built thicker and thicker emotional walls to surmount. This then blurs the distinction between fate and choice. I trust that our self-sabotage is far scarier for us than any Halloween image we may encounter tonight.

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Guilt: The Most Tenacious Emotion

Mr. Guilt gets it wrong so much of the time, skipping over people who should feel its punishing pinch, and injecting its emotional pain into compassionate people who should be fully at peace with what they are doing or have done. The public pictures chaplains hearing confessions of sin that people feel guilty about. But  patients and families under my care rarely have wrongdoing to reveal to me, such as skimping on care for a loved one in order to ultimately have more money for themselves, or confessing to assault, harassment or any other kind of crime from their past. Much more common is the guilt for things they should not feel any guilt about at all, and if anything, should be at peace with or even proud of.

I am thinking now of a patient Matilde, who has been so religious all of her life that “she almost became a nun,” a child of hers said. She is confined to bed. When I see her, she speaks Portuguese and she settles for my Spanish as a linguistic compromise.  At each visit, she laments that she cannot get out of bed and go to Mass. I assure her that God is everywhere, including her room, and usually this does not console her. But one time I said it again and went into more detail, and to my consternation, she started to cry even more. “What did I do now?” I  (guiltily) wondered to myself. Fortunately her sister was visiting and she could translate the amount of Portuguese the patient was saying that I did not understand—which I assure you was a substantial chunk. She translated, “I am crying from happiness, not distress, because you brought God to me.”

As moving as that was, assuaging guilt is the exception. Trying to do so might even let Mr. Guilt become even more entrenched. I have to remind myself that instead of talking a person out of guilt to let them talk about their guilt. This is really no different from how the helping professions should operate regarding any kinds of changes for the better they yearn for their clients to make.  We have to ask questions that will unearth hidden angles. We have to refrain from giving them the distraction of resisting our suggestions of “Don’t feel guilty” instead of exploring what ghosts past and present are fueling it. Clients have to find the end of their guilt trips on their own, and all we can do is illuminate the obscure segments of the journey.

Sometimes I am lucky enough to see Mr. Guilt being let out at his last stop when a client talks with me about their guilt during a series of conversations. There was the case of a patient’s son, who I will call Samuel. His mother, who will get the name Jackie, was a patient of mine for around a year. I saw that when he visited her, she would needle him about this or that and make sarcastic jabs at whatever came to mind. When I spoke with Samuel about this after his visits, over time he built up a story of family relationships with plenty of twists and turns for guilt to ride along in. I was surprised first of all when he said his mother favored him over his other siblings, given all her hobbling negativity towards him. (If that is favoriting, I wonder what his siblings dealt with; i.e. “With friends like that, who needs enemies,” as the saying goes.) Over time Samuel talked about his sources of guilt, amply supplied not just from within, but from his siblings. The gist was that they accused him of not giving his mother enough care, the right care, enough money, enough visits, and so on. No praise and certainly no encouragement that I supplied about his compassion, his constant visits from far away, no lamentations over the hostile texts and emails from the sibs which he had showed me, served to derail his guilt. Of course guilt stalks a favorite child, so I knew this was part of the story, which we discussed. I suspect even Joseph felt ill at ease as much as he reveled in his coat of many colors. Still, covering that did not make any headway either.

I soon refrained from praising him and discussing favoritism and over time uncovered a clue that at least took guilt out of the driver’s seat: “When you feel guilty, this lets your sisters do their job for them. They don’t have to feel guilty about anything they do; they just lay it all on you and instead of them beating you up, you oblige and do all the work of beating yourself up for them.” For the first time regarding his guilt, Samuel said he felt “lighter.”  A day later he emailed me that he was sleeping better. Ah, Mr. Guilt, I got you that time!!

Not The Last Word On Last Words

There is a mystique out there that a dying person’s last words will contain rare wisdom or will give us a clue about what awaits us in the Beyond.  Emily Dickinson’s last words were supposedly, “I must go in, for the fog is rising.” Even if she did say this, for the overwhelming majority of us, the idea of our last words being jam-packed with significance is just a romanticizing of the end of life. The death scenes in many movies of a loved one saying a few brave words, letting out a sigh, and then turning their head away as they painlessly depart are no closer to the truth.  Also, I am skeptical of people having the presence of mind at the very end to be witty as in the famous quote by Oscar Wilde, purportedly his last: “This wallpaper and I are fighting a duel to the death. Either it goes or I do.”

Sorry to shatter this myth, but my experience on the job as a hospice chaplain is that last, or close to last words, are often mundane or consist of expressions of discomfort. “I am thirsty.” Or “I’m dizzy.” Or, “What time is it?” Or, “Oh my stomach hurts and I have to go to the bathroom” is more likely. Or something confused, as when I gave a woman some tepid tap water and she said, “That is the most delicious thing I have ever tasted.” There may not be any words at all, of course, if the patient is unresponsive or can no longer verbalize or is unintelligible or incoherent.

If it is any consolation, “next-to-last” words of a person still relatively clear-headed and sans dementia, can have more significance. “I love you” is very common, as are expressions of concern that the patient’s loved one will be able to get along after the patient is gone. Sometimes I do hear questioning of what their lives were all about, or declarations of faith or what has mattered most. One of my patients talked at length about some poems he wrote in a book he gave me as a present. He loved having me listen to him reading a few aloud and getting my reaction. He even asked if I would promote his book in my blog, something I could very much relate to as an author myself. Not many days later his life ended. In his memory I will mention the title of his book: Lifelines by Ben Verona (He chose this name, a pseudonym, because he thought it sounded Jewish and romantic and would attract female Jewish readers!)

Perhaps we want to think literally about final words because of the unknowability of death itself; as if part of what death is all about “seeps” into the final moments of life, throwing us a clue here and there. But unlike a novel or a film, alas for us real people, loose ends are left loose, and the ending after the ending is left undisclosed.

Fast Backward

Juliet, the wife of a patient of mine, used to work at the residence where I now serve as a chaplain before it became a hospice. “It was a place for elegant ladies,” she said, fondly reminiscing about the luxurious setting she experienced there some sixty years ago. “I would prepare their lunches and set the plates in front of them by the hand -carved napkin holders on the linen tablecloths and run other errands. And they wore gloves as they ate and most of them wore tiny white caps on their heads. They were so well-to-do. And another thing, if they wanted to leave the premises, they had to sign out with the receptionist to go out to lunch (never mind dinner) and then sign back in when they returned.” As she relived that time, I wondered where all this quaint standard of behavior really happened. In Mayberry perhaps?

The residence is actually in Elizabeth, New Jersey and still has the features of a mansion, such as chandeliers, a stairway carpeted with a floral design, sun rooms overlooking a gushing fountain, a miniature walkway, and gardens that meet the standards of squirrels and Siamese cats. One of my other patients there, who had been homeless, felt he too had fallen into the lap of luxury, as if sensing its former classiness. “This is like a hotel,” the former motorcycle repairman told me. “I get food brought over to me anytime I want and don’t have to do anything. I can stay in bed all day if I want.” He also liked not having to hustle for drugs and could get all the pain medications he wished on demand. His friend even cautioned him to treat us staff “real nice” because it was a special place and he should not do anything to get thrown out. But both of them knew darn well what he was there for, and the patient took a guess that he would last for two months and then that would be “it.” He figured the residence was a great warm-up for the hereafter. Nothing like ending on a high note. But before “it” happened, he showed me pictures of the detail work he did for motorbikes, and had me run a tape of a band he had played with on a cassette player borrowed from the recreation room.

The inhabitants at the residence, like the mansion itself, keep transplanting me back to their individual pasts as I listen. With so little future ahead, they prefer to unravel their own long histories rather than poke around their Spartan present. As I listen, I do the opposite of what you might expect from a chaplain: I midwife a rebirth of what has already occurred; I do not flash forward to presume what a patient may expect in the Beyond.

How To Honor Thy Abusive Mother And Father

Guest blogger Rabbi Dinerstein-Kurs wrestles with this perplexing paradox and comes out on top, and in the process, comforts those of us who have had abusive parents:

“For those of us who had neglectful or abusive parents now deceased, what do you do with the Fifth Commandment, which seems to say be good to them by honoring them with memorial prayers? I think the question should be flipped: How can one have positive self-esteem yet still honor such a parent?

Data and surveys show that certain negative behaviors of parents – witnessed by children – can often lead to children continuing that behavior. To honor ourselves, we would have to make a concerted effort to knowingly and willingly and purposefully separate ourselves from such parents, the bad influencers.

During our moments of memorial prayer we can give thanks that we are not them. We can review the past with sadness, but hopefully also see the present and how far we have come in spite of their actions. That we have overcome, that we are stronger for it, as we are standing here and are no longer broken. For those of us who are not yet completely healed – Please God – there is tomorrow.

In bad times, we need to build ourselves up, even when others try to knock us down. Remaining strong is the biggest push back to their attempts to keep us weak.

These prayerful moments such as at the anniversary of a death afford us the opportunity to give the royal finger, saying, ‘I am a survivor of your actions. I am here, I am relatively happy, and I will move forward.  My horrible memories can be countered by my successes.’ There is no law preventing anyone from changing the words of the prayer to fit the occasion (custom – maybe – but not law). Reinvent the prayer to say what is in your heart.

So with every moment of a memorial prayer, those of us who might find love and loss difficult concepts recalling their various and sundry relationships, we might take the time of prayer as our personal time to:

1) Smile as we free ourselves to say the truth.

2) Be proud that we are not them.

3) Stand up tall, shoulders back – for what we have accomplished in spite of them!

4) Thank Adonai that we have become the fabulous persons that we are – on our own – with little or no help from them, and likely no support!!

5) Pray with gratitude and joy that we have this opportunity to dilute a toxic relationship and call it out for what it really was.

6) Rather than dwell on the negative past rejoice in our positive present. May we have the strength to look back and acknowledge the pain…but also have the strength to move forward in gladness.

Here’s to our continued successes!  AMEN!”

Rabbi Laurie Dinerstein-Kurs hails from Brooklyn.  She held the Federation position of  Mercy County Chaplain for 15 years in New Jersey.  Her two children have blessed her with grandchildren. The original version of this article, in a version more relevant to Jewish readers, appears in the Jewish Journal: http://jewishjournal.com/blogs/expiredandinspired/225687/different-take-kaddishyizkor-issue-rabbi-laurie-dinnerstein-kurs/

 

Telling It Like It Was In Castro’s Cuba

In my last post I wrote that relating to others as a chaplain is like performing improvisational theater. I go into each encounter with a patient with no script in mind, and what they say shapes the give and take between us. But the flavor of interactions at hospice varies so much, I get to sample a number of careers, not just one. Sometimes I feel like a detective, following up hints my clients inadvertently drop which point to hidden deeper concerns that they feel too hesitant to express outright to a total stranger.  Other times I feel like a journalist, gathering stories of public interest. Besides “getting the story,” when I act like a reporter, I am giving the client in such cases the freedom to tell their story and fulfill their need to be heard and understood. Many of the anecdotes in Offbeatcompassion derive from this journalistic role.

Thinking back, there was a storyteller who was so anxious to have me listen in detail I think she wanted me to publicize her words so that more Americans would know what it was really like in the early years of Castro’s Cuba, in the early 60’s. I was genuinely surprised to hear such tales of woe and bravery. Like any reliable reporter, I “checked my sources” on the Internet and found that others have told similar stories.

I will call the narrator “Juana”, who spoke to me for over two hours while her loved one lay sleeping under a portrait of a friend who served in the Cuban Army prior to Castro. “My family was on the ‘losing side’, and they called the people on the losing side ‘worms,’” she explained.  As Juana spoke, these sorts of details reminded me of Nazi behavior. She went on, “The people did so-called volunteer work in the cane fields. Very hard labor they would ask people to do on their time off. But I did not do it.” Instead she went to study at a medical school, hoping to find a niche in Castro’s Cuba where she could do something productive and avoid some of the worst consequences of his regime.

But even there she felt society had become so warped that she could no longer find a viable place to fit in. She said, “the school had ‘cleansing meetings,’ where in front of all the students they would say which students they were going to expel. And then one time I heard a shot and later I found out a student had shot himself after learning that his girlfriend was expelled.” This gruesome story reminds me of the recent science fiction thriller movie The Thinning, whose equally gruesome premise is that those who fail a school aptitude test are executed in order to ensure population control.

One other significant anecdote she shared was about the U.S. Naval base in Guantanamo Bay. I have always thought of the part of Guantanamo Bay which serves as a prison, but Juana explained that Cubans would try to climb over the fence to be on U.S. soil and gain their freedom. Some Cubans eventually were allowed to go from there to the U.S. Juana told of one exploit where the escapees practiced going over a similar fence elsewhere before they went on a train that passed very close to the naval base fence. “The conductor had a plan in advance, these people went on the train on a particular day from all over Cuba; from many provinces. The conductor stopped the train real close to the fence. Not the usual stop. He opened the doors and the people all dashed out and rushed over to the fence. Many climbed up but the guards up on the towers shot at them and some were hit and killed. But a lot of the people made it. They made it to freedom.”

Getting Into The Act

My childhood dream of becoming an actress has come true: relating to others as a chaplain is like performing improv theater, only the “audience” is participating at least as much, if not more, than I.

For instance one evening as I was walking towards one patient’s room, I heard someone just across the hall saying, “Look there goes the chaplain.” I took that as a cue to veer away from my original destination and detour towards that merry invitation. The beckoning voice was the patient Maxine’s brother, and as I walked in, Maxine looked me over with as much delight as if I had been made out of chocolate all ready to consume in bite-sized pieces. We three engaged in the sort of talk that paradoxically refers to nothing much in particular but warms people up to each other. Maxine suddenly stalled the banter with, “I want a hat. I want something around my ears.” It happened to be on the weekend when the receptionist was not on duty, and I was not sure where the donated clothes were stashed. As I stepped out to ask the aides and nurses, they did not know either. I even went over to one of the cooks, and as we were talking about the clothes, I noticed a white thin net the cook used while on her shift. Ah! There was the prop I needed. Better than returning empty handed I could improvise and bring one of those nets to Maxine. I asked the cook if there were more. Skeptical, she handed me one from a stack daintily lined up on a hook.

When I came back into the room I gambled on the patient having forgotten exactly what she had asked for since she had some dementia. Sure enough she enjoyed the attention of having me place it on her head, and her brother laughed along with me at how charming it looked.

That same day, I went to someone’s private home, expecting to see the patient Marge and her sister. Her sister had asked me to come over because  Marge did not have much longer to live. Instead, I saw an aide-turned-friend there who wanted to pour out his angst, not about being at the point of losing someone who he was so devoted to, but about the President of the United States. This was the first time I had listened to political fears as a form of spiritual distress, so like changing my direction from one “stage set” (i.e. room) to another, I had to swerve from the intimate atmosphere of a friend grieving imminent loss of another friend, to the public source of his feelings of vulnerability. This friend told me about how the President has bred in him his own fears and feelings of negativity which he has not confronted in himself before. He is worried about the resultant changes in himself and in our society. By the way, the “subscript” of this genuine alarm over politics may have been a way to hide from his sadness at the patient’s waning days. But as with improv on the stage, I went in the direction the other “actor” chose, not what I knew to be the deeper issue. Perhaps in the next “act” he will be ready to go there.

As I understand it, the way improvisational theater works is that one actor spontaneously starts some miming action or indicates some trait in him- or herself or in the other actors. This is called an “offer”. Then the other actors build on that, and so on, back and forth among the actors or among themselves and members of the audience. On my own “stage” a lot of times I wait and see what the patient will offer as a first cue for me to react to, and then I take it from there. Coming into these unscripted situations and having clients make the first offer is the appeal as well as the challenge of being a healthcare chaplain. It also cuts to the chase for spiritual healing.