A Dementia Returnee

What would it be like if a person with dementia could be cured and then be able to describe her journey to and back from this disease? I let this play out in my imagination in my gentle science fiction book, Curiosity Seekers. And if you are curious about such a premise, you can read two excerpts below. The first excerpt is from the beginning of Chapter Two, “A Dementia Returnee.” It refers to the main characters and their financial planner Virginia, who gets the disease and is one of the first cured. The second excerpt is where Virginia starts to recover, and with the help of a researcher, starts a diary of her experiences “returning” from dementia. Later in the chapter, she continues recovering and keeps her diary, but some new challenges arise. You want to know what they are? You’ll have to read the book!

Here are the two excerpts:

“Even a recluse knows that around the year 2056 patients with dementia had become as obsolete as doorknobs. But only a precious few individuals are aware of how the initial returnees from this malady reassembled their minds. Even less known is what the experience felt like to them on their way back, which by my sights is the most fascinating of all. As it so happens, Muriel and Gomer Ackerman witnessed this remarkable part of medical history starting in the year 2053 because of their association with their financial planner and friend Virginia Boyden. Upon her retirement in 2047 she became very good friends with Muriel. When Muriel had made that card to cheer Virginia up after fifteen years of service, neither realized then that the planner was exhibiting the first signs of dementia.”

“Dear Sweet Diary: I feel like I am catching up with the pace of what is occurring, like a rocket catching up to some fleeing asteroid and now able to see what is on it. A researcher here named Dereck explained that I am taking a drug that might make me healthy again. I’m not sure what kind of health he is talking about, but it seems that I can grasp an ever-expanding environment around me. I feel like reality is resuming its lodging in some previously vacated spaces in my brain. Yes there’s this nursing home, for that is where I am obviously. Did I have amnesia after all? Dereck has explained, but I still can’t make out what happened. The nursing facility is in a town not terribly far from where I used to live, and visitors come in from the outside, and I can remember more and more about what they have to do with me and me with them. I can talk in a code they can understand more easily, and they have stopped looking dismayed like before when I had randomly tossed out words hoping some of them would land in the zone of appropriate responses. I am still missing some words, but my visitors, especially my family, can now help me put together a fairly close estimate of what I really want to say.”

Write or imagine your own ending to this story, or find the book at https://www.amazon.com/Curiosity-Seekers-Karen-B-Kaplan/dp/1541326946

For my microblog, go to https://twitter.com/chaplainkkaplan

 

The Happiness Equation

Case #1: A young man is a live-in caregiver for his stepmom, going on now for three years, with no time off except two hours a day and the occasional bonus of several hours on a weekend. Our hospice gives him the opportunity for free, every three months, to have his mom stay at our residence for four days with twenty-four hour care but the son never takes us up on it. I used to think it was because he was afraid of freedom, being at a loss of what to do with it. But one day he figured out for himself why he has hesitated, saying, “Once the door is opened, I just won’t be able to go back. I’ll never be able to bathe her again and stay home for hours on end. I’d rather wait until I’m free all at once.”

Case #2: A lady at our hospice residence was about to turn ninety. She loved activities of any kind and the stimulation of gossiping to me about the other patients and families. Her family wanted her to leave the residence for a day trip to celebrate her big day. “At first,” she confided, “I didn’t want to go, because after having a great time away from this place, I’d be sad about having to return here and be lonely again. But then I decided I would go.”

On the face of it, there is something missing in our reasoning about not wanting a break or enjoying an event because it would force us to rub our noses in the drearier aspects of our routine once we resume it. Maybe that is partly why so many United States workers don’t use up their vacation time. Thus, these cases are highly relevant to all of us in situations where less is at stake than in hospice. Are you more like the young man or the lady? Each of them went through their own cost-benefit analysis of how much sadness would ultimately be subtracted from the happiness gained. The man thought it would be too much a cost, and the lady thought it was worth the price. I say nay to Case #1, and yay to Case #2.

So let’s think about this for a minute. There is a reductio ad absurdum here. Are we never to let ourselves be happy by leaving our routine because we will be sadder upon our return than if we had never left it? This means we would always be a little sad and never be happy. It would also spell out a dull life. And what’s more, this cost-benefit analysis is flawed, because the relationship between happier-than-usual times to our routine times is not all zero-sum.

I went on a vacation to Stockholm last June and I noticed the glorious architecture and I ate in a health-food Japanese restaurant among other unexpected cuisines, and saw how Swedes behave differently than Americans such as their concern whether my country knows about and likes them. Once home, I faced more laundry than usual and had to catch up on work, but then I had lively stories to tell, and thought more about some beautiful architecture right in my own neighborhood I had not noticed before. From the trip I became sensitized to new aspects of my routine life, stored some memories, and had some assumptions challenged about what is important. I also appreciated certain things that I missed while gone, such as the relative ease of walking on smooth pavement as opposed to the beautiful but uneven cobblestone streets of downtown Stockholm.

In sum, the answer to the happiness equation goes back to the platitudes to “enjoy the moment” and “seize the day”. But let’s remove the corollary that states that enjoying Moment X necessarily entails less enjoyment of Moment Y.

Hooked On Hospice

Working for hospice is like following the progression of about forty different plays at once. What unexpected or surprising thing will one of my forty or so patients casually drop in her conversation with me today? What new realization will I come away with? What will I learn this week about the country the patient is from or what new Spanish expression will they teach me? Which staff members will suddenly materialize at my side as I start to sing to a patient as he sways his foot in rhythm to the music?

No question hospice can be sad, but I am always a sucker for the drama involved among my patients. I get to cut to the chase and see the final act play out all the time! You might say the final act is always known so what is there to be curious about? But that would be like saying the same about any serious opera and therefore not see them. And when the patients or families reminisce, I even get to hear flashbacks of other climactic moments in the earlier “acts” of their lives.

I am not sure why this is so, but I am so dreadfully curious in comparison with most people. I always wonder what the next patient admitted will be like. I might meet a fellow writer. I might meet someone with a career I never heard of before. I definitely will meet people from all backgrounds, from people who have heard of my home town of Erie, Pennsylvania, to someone whose country I myself have not heard of. From the most vocal atheist to the most ardent fundamentalist, to a white American Muslim to a Hindu. From the straightest couple to the gayest, the whitest to the blackest, the one with no children to one with fourteen of them. I will come across the patient who wants solitude and the one who craves society; the one who is agitated and resentful and the one who is calm and humorous.

The staff members who end up staying with hospice have their stories too. One nurse has worked at hospices for over thirty years. Hospice staff have traversed the paths that have brought them to this offbeat career. Best of all, they understand why in the world I would do this kind of work. I do not have to explain. We fit in with each other even as we are seen by some people outside of our circle as misfits to shudder at.

If nothing else, this job gives me so much to think about. Mortality and spiritual values, sure, but so much more, as readers familiar with this blog have seen for the past six years. If you are new to offbeatcompassion, have a look at the past few posts. If by any chance you are pondering an unconventional direction in your career, by all means make a comment here or contact me with questions. My email is karenbookmankaplan@gmail.com, and my twitter link is https://twitter.com/chaplainkkaplan

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.

Not Your Typical New Orleans Photo

One of the elements that draws me to my kind of work (hospice) or to a story or in this case a photo, is its mixture of loss and resilience. Friend and photographer Jay Martin was in New Orleans during the Sugar Bowl and took this shot of a  person selling beads.   I invite my site visitors to let the photo speak for itself to you of obstacles versus moving along, of drabness versus color, of frivolity versus labor, of being in the center versus going unnoticed. Do you wonder along with me how he navigated with his arms extended, and whether  stretching them out like that was onerous?

Here is what Mr. Martin had to say: “I took the picture of the man selling beads from his wheelchair during Sugar Bowl festivities in the French Quarter, early afternoon, Friday, 29 Dec. ’17. A small parade of floats, marching bands, and anyone who wanted to be in the parade wound its way through the quarter. I could hear the bands playing as I spotted the man, shouting to prospective buyers– ‘Beads! Beads!’–on Bourbon.”

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Jay Martin is a technical and science writer who lives with his wife and cat in San Francisco. He has interacted with photography for over 30 years, taking pictures of people and animals. He thinks he can understand the world a little better than he did the day before by daily observation through the lens.

 

 

A Creature Called “The Author Questionnaire”

I am departing from my usual format this week, because I was interrupted last week by a life-altering event: my book was accepted for publication! (I will announce the publisher as soon as the ink of the signatures of both parties on the contract is completely dry.) The working title is Encountering the Edge: A Hospice Chaplain’s Memoir. On the heels of receiving the contract, the publisher mailed me an “author questionnaire” and gave me a two-week deadline to fill it out. It has the customary questions about my education, affiliations, current and past jobs and whatnot. But a portion of it in effect says, “Go outside and play.” This is the part I reproduce here for your amusement, giving you all a well-deserved break from facing death.
Hobbies: Singing at the slightest provocation, strolling through botanic gardens, speaking Spanish, Tweeting wisecracks to comedians on Twitter and reading compassionate science fiction (no swords or murderous robots).

Dream Dinner Guests: Sting, Stephen Hawking, Ruth Ozeki (author of My Year of Meats), and any actor or writer connected with Star Trek.

Which of my characters I’d like to dine with and why: One of the central characters in my compassionate science fiction story, ­Upward Spiral, is a sculptor named Clara. She says things like, “Your hair style is refreshingly unconventional.” She in part represents a more mature and wiser version of me in the future, so it would be great to get her advice ahead of time and save myself a lot of heartache.  http://www.bewilderingstories.com/issue484/upward_spiral1a.html

Book I’m reading now: Strange Pilgrims by Gabriel Garcia Marquez (I’m not bragging; I’m reading it in translation.)

Favorite job: Interim rabbi for Temple Beth Am in Manhattan, where I could write provocative sermons and spend most of my time visiting the sick and dying, all without worrying about the Board of Trustees renewing my contract.

Favorite summer job: Security Guard for an all-girl’s dormitory at the University of Texas at Austin. My employer said it was the first time he decided to hire a woman for this job because I had “experience of the world” from having lived in El Salvador, Colombia and Japan.

Writing mantra/inspiring quote/best advice to beginning writers:

(1) Write the first several drafts for yourself. Then write all the subsequent drafts for the audience.

(2) After you think of a “bright” idea or a way to express something, don’t stop there. Ask yourself, “How can I take this one step further than anybody else with the same idea and make it more precise, more unusual, more beautifully put, more convincing or more moving?”

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A question for my blog readers: How might YOU answer one of the questions in the author questionnaire?

What is offbeat compassion?

When I told friends, family and Twitter followers I would be starting a blog, they wondered if my anecdotes about people in Act 3 Scene 3 of their lives would be comforting or inspiring. They wondered  (and either hoped or feared) whether I, a hospice chaplain, had a religious agenda.  Hospice after all is a heavy-duty subject. Chaplains after all are, well, chaplains. Despite this, I have foregone any such goal. There are plenty of other books and blogs that already perform that service. Rather, my purpose in all of my writing is to bring readers  close-at-hand to places they are ambivalent about approaching, yet respect their need for space. Rather than perform the distasteful task of selling you a message, I feel my task is to let you see for yourself what hospice patients think about, value, believe, and avoid.

My attitude towards the hospice patients and their families is similar. I am not there to promote anything, though my presence may be of comfort. As a quiet nonjudgmental presence, they have full leeway as to what they want out of my visits, whether it be a listening ear, song, prayer, touch, casual chatter, or even simply just sitting silently with them. So one of my definitions of “offbeat compassion” is making room for persons who call upon us for help and letting them freely sort out for themselves how we can be there for them.

In the coming months, I will blog about anecdotes about the dying and with grievers, or  tell you about my experiences with such groups as a threshold choir (they sing to the dying), my responses to others writing about similar topics to mine, give book reviews, and provide excerpts from my hospice memoir. As this evolves, I look forward to amplifying comments you make and answering questions you may have. I plan to ask you challenging questions too. Who knows, I may give a pop quiz.

Since this is my maiden post, above all I want to thank all of you for venturing with me into this sometimes soothing, sometimes strange, sometimes curious, and sometimes funny ride.