Category Archives: death and dying

Is that all there is?

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“Is that all there is? Is that all there is? If that’s all there is, my friends, then let’s keep dancing. Let’s break out the booze and have a ball. If that’s all there is”.

Is that all there is for too many of us folks who have made it thus far into our 80th decade? Isolation? Boredom? Loneliness? Disconnect? Physical failures? And with no energy or opportunity to “have a ball”?

While the hours seem to drag on, the weeks seem to go by quickly. There are many hours when I sit in my recliner and let my mind go blank. I think about nothing, feel nothing. I am suspended in time and nothing matters. It is my ultimate respite.

I do perk up when I sit down to watch The View. I record it and and watch it while I eat lunch. The kind of women who animate The View are the kind of women who were a part of my close group of women friends when I lived in Albany (before I retired to take care of my mother who had severe dementia). Politically liberal, irreverent, savvy, and funny, we never ran out of things to talk about or experiences to share.

That is what I miss most. That connection to kindred spirits.

Over the years, I had tried, unsuccessfully to get one one of the local Senior Centers to start a women’s discussion group of some kind, in hopes of meeting new friends. It’s taken a while, but my local Center is planning to start what they are calling a “Gals Gossip Group,” and they are looking for someone to volunteer to facilitate it. I volunteered.

Of course, I probably won’t be able to drive for a while, and I might have to still use the walker, but the Center is only 5 minutes from the house, and my daughter said that she would drive me.

The other kind of discussion group I suggested (but was met with discomfort and rejection) what is called a “Death Cafe”.

At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. Our objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’. A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session.

The linked video about gives you an idea about why folks want to talk about death.

So, because I am still alive and kicking (well not kicking with the broken ankle), I am waiting for the delivery of a pair of shoes that I hope will accommodate the ankle brace I’m going to have to wear for a while when I get rid of the uncomfortable boot.

Meanwhile, anyone have any idea how I can have a ball? Or is that all there is?

The Beginning of the End?

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My last post appeared here exactly one month and one day a year ago. The poem I wrote on that day pretty much describes what this past year has been like, filled with dental difficulties, lower back and joint pain, worsening my of hiatal hernia and GERD, and struggling with such existential issues as what the hell is the point of my being here at all at age 86.

Complicating my struggles even further is the fact that I fractured my right ankle badly four months ago, resulting in three separate surgeries and bouts in and out of rehab.

Currently, I am wearing one of those Star Wars-looking orthopedic boots on my right leg and a lift contraption on my right shoe to level out the length of my legs to enable walking. Yeah, right. It’s like trying to walk with a shoe box on each foot. So I have to use a walker to keep upright.

I have spent the past four months pretty much homebound with my foot elevated and my daughter taking on the exhausting role of caregiver — giving me my meals, my meds, and whatever access to the outside world that I need to have, including trips to the doctors and careful forays onto the deck in the backyard (weather permitting).

I can’t help looking at this as the beginning of the end, because from now on, it’s only going to be one thing after the other, as my assorted healers keep track of my chronic kidney disease, the damage to my digestive system, and the need for pain management of my back and knee.

In the past, I never thought about how long I might live, since my life was always filled with distractions from hard realities — fun hobbies, good friends, and variety of other interests. Now I often think about dying — when, how, why — and whether I’ll ever again have a compelling reason to keep the end at bay.

Right now, it’s like I barely exist on any kind of meaningful level.

Back in the old Blogger days, many of those folks made the point that blogging was a way to write themselves into existence.

So here I am, again, attempting to write myself back into existence, trying to find a point to it all, after all. Hoping to find a desire for desire.

The Truth About Aging

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My thoughts on the challenges of aging bubble up after having read two pieces on the subject: the book Turning: The Magic and Mystery of More Days, written by a woman in her early 60s, and an article in The New Yorker, “Why We Can’t Tell the Truth About Aging”.

The book Turnings is a well-written conversation about how to prepare to enjoy getting older. It’s a great book to use as a stimulus for discussion, since it offers engaging exercises to examine what aging might have to offer you. But it is written by someone who has not yet experienced the realities of being truly “old”.

The New Yorker article, however, confronts the realities of aging with disturbing but necessary forthrightness.

There is, of course, a chance that you may be happier at eighty than you were at twenty or forty, but you’re going to feel much worse. I know this because two recent books provide a sobering look at what happens to the human body as the years pile up. Elizabeth Blackburn and Elissa Epel’s “The Telomere Effect: Living Younger, Healthier, Longer” and Sue Armstrong’s “Borrowed Time: The Science of How and Why We Age” describe what is essentially a messy business.

The so-called epigenetic clock shows our DNA getting gummed up, age-related mitochondrial mutations reducing the cells’ ability to generate energy, and our immune system slowly growing less efficient. Bones weaken, eyes strain, hearts flag. Bladders empty too often, bowels not often enough, and toxic proteins build up in the brain to form the plaque and the spaghetti-like tangles that are associated with Alzheimer’s disease. Not surprisingly, sixty-eight per cent of Medicare beneficiaries today have multiple chronic conditions. Not a lot of grace, force, or fascination in that.

A contented old age probably depends on what we were like before we became old. Vain, self-centered people will likely find aging less tolerable than those who seek meaning in life by helping others. And those fortunate enough to have lived a full and productive life may exit without undue regret. But if you’re someone who—oh, for the sake of argument—is unpleasantly surprised that people in their forties or fifties give you a seat on the bus, or that your doctors are forty years younger than you are, you just might resent time’s insistent drumbeat. Sure, there’s life in the old boy yet, but certain restrictions apply. The body—tired, aching, shrinking—now quite often embarrasses us. Many older men have to pee right after they pee, and many older women pee whenever they sneeze. Pipher and company might simply say “Gesundheit” and urge us on. Life, they insist, doesn’t necessarily get worse after seventy or eighty. But it does, you know.

When Socrates declared that philosophy is the practice of dying, he was saying that thought itself is shaped by mortality, and it’s because our existence is limited that we’re able to think past those limits. Time has us in its grip, and so we devise stories of an afterlife in which we exist unshackled by days and years and the decay they represent. But where does that get us, beyond the vague suspicion that immortality—at least in the shape of the vengeful Yahweh or the spiteful Greek and Roman gods—is no guarantee of wisdom? Then again, if you’re the sort of person who sees the glass as one-eighth full rather than seven-eighths empty, you might not worry about such matters. Instead, you’ll greet each new day with gratitude, despite coughing up phlegm and tossing down a dozen pills.

The one way to prepare for the challenges of being old is to develop a sense of humor that can help take the edge off stark reality. Judith Viorst’s book Unexpectedly Eighty seems to do just that. I haven’t read it yet, but I plan to. As I prepare for another gastroenterology test, I could use a good laugh.

The Face of Pain

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My mother had passed away at age 94, after a decade of increasing dementia.

         While  Words Fail  
She was gone before she went,
slipping into that final forgetting
with each hollow breath.

I was her angel, she said
as she sat at the sunny table
picking at pancakes and coffee
while she still could smile
and think meaning.

Music kept her eyes alive
awhile, her feet remembering
thoughtless, but certain of rhythms
too deliberate to disappear.
She followed my familiar lead,
reaching for memories lost
with the fading of voice.

She didn’t believe in demons,
but I saw them slip inside her skin,
forcing pain from her pores,
folding her face in caverns
of anguish and alarm,
as, steadily, words fled, leaving
a frightened keening in their wake.

She was gone before she went,
and when she went, the world
filled again with words.

(elf 2020)

Dooce is Dead

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“Dooce” was the blogger name of Heather Armstrong.

The pioneering mommy blogger Heather Armstrong, who laid bare her struggles as a parent and her battles with depression and alcoholism on her site Dooce.com and on social media, has died at 47.

As a personal blogger back in the early blogging days, Dooce inspired and pushed the envelope for many of us trying to establish our own authentic voices on the internet.  As she succeeded in writing herself into existence, she paved the way for personal bloggers, like me, to use that public format as a way to navigate our ways through tumultuous personal times because we did not have to feel isolated and unheard.

For me, it included years of being an abused caregiver; the five days I sat with my mother while she died;  my debilitating struggle with not being about to fall asleep; my experiments with medical marijuana; and my ultimate sleep solution with an unusual pharmaceutical.

Like Dooce, I suffered from depression, but unlike her, I have been able to control mine, and, in association with that, to finally fix my sleep problem.  For years, I tried to convince doctors that my inability  to fall asleep was a matter of inefficient brain chemistry.  While my depression meds triggered certain neurotransmitters that produce the chemicals that supported mood, they did not deal with dopamine.  After doing extensive reading on the subject, I was convinced that my brain’s inability to trigger dopamine was behind both my mood swings and my sleep deprivation.  A psychiatrist finally prescribed Abilify (which triggers dopamine) and my problems were solved.

I think of what Dooce endured as she struggled to find a solution to her depression.  Her depression grew worse, leading her to enroll in a clinical trial at the University of Utah’s Neuropsychiatric Institute. She was put in a chemically induced coma for 15 minutes at a time for 10 sessions.

She finally committed suicide.  What if her struggle could have been lessened if she just were given the blend of meds that would have balanced her brain chemistry?  Why isn’t there  more research being done to produce the pharmaceuticals that will help brain neurotransmitters produce and maintain the necessary balance of the chemicals necessary for mood balance: dopamine, serotonin, oxytocin and endorphins?  One big motherfucker happy pill that balances imbalanced brain chemistry.

Dooce committed suicide because life’s pain was more than she could handle.

Last night on the series “911: Lone Star”, a character with the last stages of Huntington’s Disease commits suicide, using what looks like helium inhalation. I happen to believe in the right of an individual in terminal stages of an illness to choose to end their life on their own terms.

I also believe that folks should be more comfortable talking about death and dying. ,  Back in 2010, there was a movement to set up “Death Cafes”.

At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session.

I, for one, would love to  have access to a Death Cafe, and even suggested that a local senior center hold one.  The idea was never even considered.

At  age 83, I think about dying, since it could happen any day, now.  I also think about living, and doing what I can to make what life I have left continue to be a hoot.  But I would love to meet with kindred folks who, like me, want to be emotionally ready when the time comes, not matter how it comes.

Dooce is dead, too young, too fraught with pain.  There had to have been a better way for her.  There has to be a better way for all of us.

GOING…GOING………………..

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The other night I dreamed of my best friend and roommate in college (from 1959-61). The last time I spoke to her on the phone, probably 7 or 8 years ago, she was living in an Assisted Living place while her husband, afflicted with Parkinson’s, was in the Memory Loss Unit. She was furious because her children had taken away her car and license.

When I “googled” her today, I found her obituary. She died in 2021, “peacefully”, it said, and suggested contributions to the Alzheimer Association.

In our Junior year, we shared a room in the sorority house with two other girls. This is three of us in 1959.

Shirley, Carole, and me.

I (on the right) am the only one of us three who is still alive.

Here are the four of us at our reunion in 2004. Shirley and Carole, in the middle, are both gone. Cathy married a guy with whom I loved to dance.  He had great style and knew how to lead.  Cathy has been a widow for the past 4 years.

Cathy, Carole, Shirley, and me.

Shirley and I shared our clothes and countless adventures during our college years. We wore the same size clothing, and I was more than happy to wear her comfortable, casual outfits, while she wore many of the dresses and skirt-sweater sets with which my family saddled me each year. Another difference between us was that I wore lots of makeup and she wore none. And while she was a Business major with a very linear and logical mind, I was an English major who fantasized about moving to San Francisco to write poetry and live in a garret. We also had different taste in boyfriends, so we were never in competition with each other. I don’t think we ever had an argument, unless you count the time my roommates got fed up with my messiness and took all of my stuff that was lying around, wrapped it all in my blanket, and threw it in the closet.

Shirley taught me to drive while she was taking the college class to get certified to teach Drivers’ Ed.  She had a car, and I was 19 years old and had never learned.

Shirley’s and my greatest adventure was heading out to Daytona Beach during the spring of ‘59 for Spring Break. We drove straight through from Albany, NY to Daytona in a little blue coupe with three guys we knew. I think it was Chuck Recesso’s car, and he did most of the driving. One of the other guys was Frank Fallace, but I can’t remember the name of the third, although I can picture his face and could probably find him in the yearbook. I remember the drive through the South and the signs in the places we stopped for both ingesting and eliminating food that boasted signs of “coloreds not allowed.” We were liberal Northerners, and were taken aback by the reality.

While the guys were probably assuming that we would hang out with them, Shirley and I had other plans, since she had male friends from Cortland State College who were also planning to be there.

I don’t remember much of our time in Daytona, but I remember that the water was filled with Portuguese Man-of-War fish, and that we partied hard (still vehemently protecting our virginities, of course) and finally wound up booking flights to come home, avoiding the stifling car ride back– 17 hrs (1,157.2 mi).

We each married in June of 1961, but our lives went in totally different directions. Shirley married the handsome and sweet Owen Davis, teaching business subjects at a community college, and boasting three children and, finally, several grandchildren.

The last time I saw her and her husband was about 15 years ago, when I met them one Fall, down in the Catskills, for an apple festival. Owen was already showing signs of the Parkinson’s disease that finally ended his life; but he was still handsome and sweet. I wish that I had kept in better touch with her, but, you know…..LIFE!

And this is the way it will go from now on.  Because, you know….LIFE!

 

Those Relentless Sands

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“It was fun while it lasted.” I guess I could say that about many periods of my life, especially when it comes to relationships with men.

I am thinking about that as I read Jack’s obituary. Our relationship lasted about three years, back in the 80s, and it was fun while it lasted. One of the legacies of that relationship, oddly enough, is friendships I formed with a couple of the women whom he dated after me. He had a knack for seeking out smart, creative women.

I kept in touch with Jack on and off over the decades. When, after he moved to Portland OR and my pedestrian son needed a ride from the oral surgeon’s office, I called Jack and he took care of it all. He was a good, imperfect guy. I am glad that I knew him and sad that he is gone.

More than ever, these days, I am painfully aware of the relentlessness of time – which really does seem to accelerate as one ages. And, here I am, at age 78, still trying to figure myself out as those relentless sands continue to carry me along.

It is all about the journey. Slogging through the sands of time. It’s all about the metaphors. Baba Bogina. The Raven. The knight with the swan helmet crest.

My Jungian therapist often uses “sand play” to stir and spur our conversations. I find that I intuitively pick out figures for the sand play without consciously knowing why. And then we work on the why.

I am still pondering why I chose the warrior with the swan helmet crest. It is the only figure I chose that was not obviously either male or female. Its face and body are covered with armor. Its stance can be interpreted as aggressive, defensive, or protective. It is blocking my path. Welcoming? Warning? And then there’s that anomalous spread-winged swan sitting on the top of its head.

My therapist did some searching before I had a chance to, and she send me a link that explained: a medieval tale about a mysterious rescuer who comes in a swan-drawn boat to defend a damsel, his only condition being that he must never be asked his name.

Does that help or not. I don’t know. I will need to ponder this a lot more as I wait for some synchronicity to spark an epiphany.

Is there someone on my path waiting? To lead me to the authentic “me”? To accompany me for a while on my journey? Or is it me in there, under the armor, my wings wanting to escape the hold of the protective helmet.

This is what my “journey” looked like in sand play.

Adrift in Archetypes

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The ancient Hanged Man is the center of attention, oddly modern in straight lines and upright, bloodless repose.

I am at a funeral mass in a church that is a testament to privilege, from the pale polished wood of vaulted ceilings to the delicate stained glass windows, graceful allegories of allegiance and ardor.

My dead friend rests in a simple urn among flowers and photos. I am here to honor him, but the incense filled air and steady droning of apocrypha ease me into images from my past life.

I am in fourth grade, sitting next to my classmate, Stanley Szymanski, enthralled by the drama and special effects of a Black Friar production of the “Stations of the Cross.” As our bones vibrate to the crashes of recorded thunder and our hearts flutter to the rhythmic flashes lightening that signal the death of that Hanged Man, Stanley reaches over, grabs my hand, and whispers “Let’s get hitched.”

I am somewhere in my pre-teens, standing next to my father, who smells vaguely of Old Spice and who subtly hums along with the inspiring choir. He is tall and strong next to me, and, for the first time, I feel stirrings of some kind of desire. Someday I will learn about Electra, and I will take courses in psychology, and I will understand.

When I return home after the funeral service, I finish reading a book I requested from its author because, these days, I am even more fascinated by death and the processes of dying than I was as a child growing up above the viewing rooms in my father’s funeral home.

I also am a fan of Carl Jung and Joseph Campbell, so I tend to have an affinity for archetypes, and Polishing the Bones by Jungian Analyst Penelope Tarasuk tells of a journey that embraces both of my passions.

It is a unique story – one that can only evolve between two very creative, introspective, and unique individuals as they embark upon a shared journey to unravel and understand, first, who they are as patient and therapist and, finally, as companions on a final pilgrimage.

Tarasuk invests eight years in partnering with her “client” to prepare for the inevitable, which comes later than sooner and provides a richness of inner growth for both.

Theirs is not an experience that can be easily duplicated, but it does offer tremendous insight into how it is possible use the limitations of mortality to spark creative energies and insight.

More than 25 years ago, I was fortunate enough to pair with a therapist who used Jungian and Shamanistic techniques to help me explore my own dreams and demons. I wrote about it in an essay that was published in 1990 in a psychotherapy journal, Voices.

If you are interested, you can read it here: shadows2

Death With Dignity

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The case for “Death with Dignity”

I have a unique relationship with death. My father was an undertaker, and we lived in an apartment above his business. Contemplating death and dying — my own and others’ — has been a part of my life since childhood. I have sat vigil during the hours and days of the deaths of both of my parents. At the age of 77, I am closing in on my final years. I have no control over when or why I will die; but I am learning about the choices I have about “how”. What I have come to believe is that it doesn’t matter what one believes about an “after-life”; what is important is to live fully while embracing the fact that we, after all, are all “terminal.” Those individuals whose religious beliefs preclude them from participating in such a process can follow the dictates of their religions, but those of us who have different beliefs should be allowed to make our own choices.

The Commonwealth of Massachusetts is once again considering a Death with Dignity bill. Modeled on the Oregon law, H 1991, Compassionate Care for the Terminally Ill Act, would give terminally ill people more freedom, control, and peace of mind at the end of their lives. It is called “The End of Life Options Act”. I noticed that both the Northampton City Council and the Amherst Town Meeting passed resolutions in early November that called on the legislature to enact “The End of Life Options Act” (H1194 and S1225). I urge other municipalities to become familiar with the intent of this bill and take action to lend their support.

Seven out of 10 Americans who support the end-of-life option allowing qualified terminally ill people to end their lives through physician-prescribed medications support having a process to enable terminal patients to choose how they want to die. Such laws have enacted and practiced successfully in other states. I believe this bill has strong safeguards to ensure that no one – including people with disabilities, the frail elderly, and the low-income –could be coerced or pressured to end their lives rather than live longer or seek continued treatment for their terminal illness.

This is NOT assisted suicide, but rather an option to give people the right to choose to end their suffering (and that of their family) when faced with a prolonged and painful dying process.

I support this bill because I have sat by the beds of both parents as they suffered through their last days and hours of pain before death took them. When my father was in the last stages of pancreatic cancer in 1984, thankfully, we were able to use the services of Visiting Nurses (this was before Hospice was available) to give him drops of morphine while he lay in his bed, gasping for air and enduring a level of pain I can’t even imagine. It took him three days to finally die.

My mother, who died at the age of 94 in the “Comfort Care” unit of a hospital, hung on for a week with renal failure, until I finally insisted that the doctor increase her morphine dosage. A “Death with Dignity” Act would have spared both my parents painful deaths that, at that point, were inevitable anyway.

Please join me in contacting the co-chairs of the Joint Public Health Committee:  Sen. Jason Lewis (jason.lewis@masenate.gov, 617-722-1206) and Rep. Kate Hogan (kate.hogan@mahouse.gov, 617-722-2130). Urge them to pass H1194 before the deadline in early February.

For more of my musings about a better way to die, see my blog post: https://www.kalilily.net/2011/10/22/dealing-with-that-disturbing-d-word-being-a-midwife-to-the-dying/

Paul read his poetry naked.

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He was a crowd favorite at urban poetry readings, especially at the former punk club QE2 on Central Avenue, where he screamed his edgy and ironic “White Boy” poems — often completely naked. Occasionally, he wore a baseball catcher’s mask to go with full-frontal nudity.

Such is how my once friend and colleague, Paul Weinman, is described in a tribute posted in the Albany Times Union today. He just died from the complications of Alzheimer’s. He was 75 years old. The newspaper piece celebrates Paul’s delightfully skewed lifestyle and creative pursuits and is an entertaining read even if you never knew him.

I met Paul when I began working at the New York State Museum in 1980. He already was a fixture and a legend in that institution, often annoying the staid administrators with his controversial off-site antics, while, at the same time, becoming a beloved and entertaining teacher in the Museum’s educational program. Parents and kids alike flocked to his workshops based on the Museum’s exhibits, and inner city neighborhood kids would show up in the Museum after school hours just to hang out with Paul and be entertained by his adventurous historical tales and re-enactments of life in the wilderness of the Adirondacks. He treated all kids with respect and affirmation; he dealt with adults with honest response to the way in which they dealt with him; he responded to the hypocrisies of every power structure with naively gutsy irreverence.

My professional path crossed with Paul’s because we were both poets in an institution that shared a building with the New York Sate Library and Archives and that often held literature-related events. Together, Paul and I organized and hosted the Museum’s annual “Banned Book Week” public readings. We held ekphrastic poetry events in conjunction with Museum art exhibits. We worked well together as colleagues supporting the educational mission of the New York State Museum.

Outside of our jobs, as part of the Albany poetry community, we came to know each other as writers, although our styles — in both content in presentation — had very little in common. As a challenge to my more conservative bent, one day Paul suggested that we do a collaborative poetry chapbook that explored male-female sexual tensions. I would write a poem and then he would write a poem in response. We would go back and forth like that until we had enough for a chapbook. Paul would print out and staple copies of the chapbook and then distribute it, for free, around the area, as he did with all of his poetry projects.

The whole idea was way out of my comfort zone, but Paul was pretty much an icon in the local poetry scene, and I was intrigued by both him and the challenge.

eating.jpg
This is what the cover and back page our chapbook looked like. “Fruits of the Harvest Press” is just the name Paul gave to his own personal printing and distribution system. There’s no date on the publication, but it probably was in the late 1980s.

It took me a while to figure out how to approach the subject of sexuality, but I found a way to do it my way: through food metaphors. Hence the title: “Eating Disorders and Other Mastications.” My first effort was inspired by a Thanksgiving turkey neck.

something about turkey necks,
gizzards nestled in palm of hand,
stroked with oil,
moist heated
until firm, juice-laden,
ready for needing,
nibbling, gnawing–
lip-licking
fine night dining,
giving
thanks

And we went on from there, as I branched out from the food metaphors into other expressions of female sensuality and Paul responded with blatant come-ons such as this, which became one of his famous “White Boy” series:

IN QUIVERS OF INAD-
EQUACY, WHITEBOY TRIES
BUCKUP UP HIS IMAGE
AS HE STRUTS FOR ELAINE
A.   autographing pens
      strapped to hips
B.   rakish hat
      festooned with
      panty hose
C.   boots tooled
      with female in-
      initials, cellular
      calling codes
WHITE BOY TRIPS…
POLEVAULTS ON THAT
POINT HE’S TRYING 2
GET ACROSS: ARRESTED
4 SEXUAL HARASSMENT

My relationship with Paul never moved beyond friendship, although as a willing participant in Dionysian revelry, he might have taken it in that direction. But as attracted as I often was to “bad boys,” Paul was way out of my league in that arena. Plus I got to know Paul’s wife at the time, Judith Braun , a talented visual artist who really didn’t come into her own until she divorced Paul. I liked Judith, enjoyed the bohemian parties they threw, was energized by the creative energies with which they always were surrounded. Paul caused me to stretch the boundaries of my writing and my perceptions of what is acceptable to me in both words and life.

Paul loved the lore of the Adirondacks, and he spent the last five years of his Alzheimer-ridden life making miniature chairs out of tree branches. As the newspaper tribute reports: He built miniature chairs in the Adirondack twig furniture style and left them anonymously around town with a note: “I’m an orphan chair. Please take me home and put a stuffed animal or plant on me.”

I don’t know his latest wife, but I’m going to try to contact her to see if I can get one of those chairs to hold a plant in my garden and hold his memory in my heart.