When Live is Live, and Why Live Matters

Lydia Diamond's adaptation for the stage
of Toni Morison's first novel.

My partner and creative collaborator and I ventured back into the world this weekend, taking in a live concert and two live theatrical productions. Huzzah! Each was magnificent. Our souls, our skins, our beings vibrated with the songs and words of others.

Let's talk for a moment about the power of "we all breathe the same air."

Let's let out a sigh of relief for the ability to do this safely, and for those who have ensure that: the scientists and their vaccines, the Biden administration and its focus on distribution and relief.

Let's humble ourselves -- just for a moment! -- in the sweet, anti-American mythology that each of us as individuals does NOT exist in our own pod of self-sufficient, bootstrapped being, but rather is dependent upon everyone before us and around us for who we are.

COVID, a potent symbol of this dependence, remains out there and we still want to reduce and halt community transmission and the variants it allows to develop.

We also want to heal the damage caused by social isolation.

We want to heal the damage to our hearts and souls by two years not experiencing live art together.

A fascinating new play at the
Central Square
Theater in Cambridge.

With luck, the pandemic has caused more U.S. residents to be aware of the elemental, crucial role live performance plays in our hearts, minds, souls and communities: in our shared humanity.

Truly, our crisis in culture -- the arts and humanities -- had been already building steadily in this country for decades pre-pandemic. TV's and even radios beamed entertainment directly to our homes long before the internet, eroding our need to venture into the dangers of the public domain.

Yet the performing arts, unlike TV, are not "just entertainment." When we are live in a room with others, we are not merely on a one-way road, consuming what is transmitted to us; or even in a two-way or multiple player super highway of electronic gaming. We are exchanging breath with the performers and other audience members. We are participating in the creation of that performance and experience.

The Isabella Stewart Gardner
Museum: the privilege of 
creating one's personal abode as
lavish performance-art-to-be-
experienced.

In fact, the role culture plays in our continuous development as human beings is a happy "withdrawal from utility," a delightful counter to the increasing transactionality and monetization of all things in our society: "art and thought are forms of activity that have no immediate end." (1) This is, of course, also why a liberal arts education is such important preparation (i.e., not "training) for the world of work and citizenship -- but that is a separate post.

I'll close this one by further referencing my "main woman" of political theory and philosophy, Hannah Arendt. In her essay, "The Crisis in Culture" (1968), Arendt argues that art is political: not in the ways it might speak directly to social justice and change but precisely because it is not a commodity and therefore requires us to gather in the commons where we must accommodate the perspectives of others.

More on the importance of "the commons" -- or the polis -- anon.

#ArtNotEntertainment

#StopConsuming

1. Julia Reinhard Lupton (2014) Hannah Arendt and the Crisis of the Humanities?, Political Theology, 15:4, 287-289, DOI:  10.1179/1462317X14Z.00000000085

My Life as a CNA #4: Our Fascinating Stories

Like many of you, I've become a little obsessed over the last few years with the mysteries presented by DNA connections and expanding Ancestry family trees. Like an Advent calendar, the little square photos of the digital tree open into unexpected narratives. There's so much we do not know even about those genetically related to us. Even those just a single generation removed.

And of course for me the mystery is doubled by my adoption. So I've got two trees going, with multiple collaborators: my beloved family of adoption, and the far more mysterious French-Canadian immigrants for whom I can thank my genes.

But the truth is the folx to whom we are actually related are only one surface of our multifaceted, glittering stories. I've yet to meet a single human whose story doesn't surprise and fascinate me. 

On my last day of clinicals at the hospital.
I'd just successfully fetched and learned how
and why to operate this Bladderscan machine.

Stories are one of the especially great aspects of being a nursing assistant. CNA life could, I guess, be called the opposite of glamorous (as many of you have pointed out in emphasizing it was fine for you as an entry-level teenager, but good to leave in that youthful past!) or well-rewarded. What CNA life IS is skilled -- the more you know about human psychology and the body, the better off you and all your residents will be -- AND an on-the-ground, direct caretaking profession that most often serves those with the least among us: the increasing number of U.S. citizens with dementia and its related diseases who end up in long-term residential care centers (i.e., nursing homes) because that is what our government safety net of Medicare and Medicaid will pay for.

My mom and...not my dad.
An unnamed soldier.

How we grow old and die is, sadly, very much about economics: which perhaps offers a more humane rationale on our "run-for-the-riches" U.S. dominant culture? I'm not going to conjecture further on this here; but I do know that everyone deserves to age and die with dignity which, for a majority of people, would be in their own homes. But that's not often how it comes down if you get to the end of your life with limited resources; and as 55 million Baby Boomers are expected to be diagnosed with some sort of dementia over the next 20 years.

As nursing assistants, we get to spend more time than any other professional with residents as we assist in feeding, toileting, bathing, grooming, ambulating -- and listening, and storytelling. The majority of folx in our care have been through many decades filled with experiences: childbirth, the deaths of spouses and children, school, travel, work, the challenges and diseases and traumas of poverty, sexism, racism, homophobia and more. Each one has a unique story so that by the end of every shift I feel I've been living in a new patchwork quilt of colorful, intriguing lives.

H. is 94 and tough as nails with the staff. But she looks like my grandma, and she is sweetly gruff with me. Her next door neighbor suffers from schizophrenia and bites and kicks and...is the staff favorite. Across the hall is a woman who has lived for 40 years off the grid and is now subject to the constant background noise of TV. In the skilled nursing wing, a man on hospice remains a voracious reader and paints images of lobster boats. His neighbor, only 66, is a former half-miler and confined to a racing wheelchair with early onset Parkinson's. On another wing is a 54-year-old disabled by obesity and a stroke who tells me, repeatedly, how difficult aging is (I didn't tell her my own age!). She's ended up here as a result of nowhere else to go and no way to care for herself; and is pretty mean with the staff out of her own lack of agency.

They are all (including the mean and desperate 54-year-old) fascinating. I adore them all. And the stories of their lives, and how those shape their current responses and choices, enrich me with every shift.

#CNALife

#caretaker

#mysteries

#storytelling

My Life as a CNA #3: Love Not Charity

The scrapbook my mother made for school when she
was eight years old in 1931 in Old Saybrook, CT.

When my mother was eight years old, in 1931, her assignment from some inspiring and resourceful classroom teacher was to create a family scrapbook.

It's a remarkable document, captioned in my mother's youthful penmanship, replete with some of the only labeled photos of our ancestors I've found amidst bags and bags of curled and unnamed images. It includes a handwritten list of the genealogy on my maternal side, and photos of my grandmother's house where not only my mother and her two siblings but I as well were blessed to have grown up.

My grandmother and then my mother held onto this priceless archive until my mother's death in 2014, although its existence had been long forgotten by the time of my arrival in the 1960's. I never saw it or knew of it until, after her death, I began to sift through the boxes stored in my mother's basement. The treasure of things not discarded.

Each day I am at the nursing home, I am reminded of how much, and who, we throw away.

Elderly people--similarly to, as is often noted, babies--require a great deal of love and caretaking. Many return to that undeveloped innocence where they no longer are able to independently perform their basic mammalian functions of toileting, walking, and eating; nor the more advanced aspects of our humanity such as speaking, singing and dancing.

The biggest difference between babies and the elderly? Babies are our futures, reminding us that life is eternal even when our own is not. The elderly--our ancestors--lives are in the past. They remind us that our deaths are inevitable and coming quickly.

Increasingly, in our White U.S. culture, elderly humans--because they are not rich in future-time--are becoming, alongside the poor, the homeless, the incarcerated--the expendable. We push them aside and into corporately owned, for-profit facilities because we have created a culture in which we have neither the resources nor the time to properly care for them in our/their homes. In some cases, we are forced to institutionalize them to ensure they receive the medical care they need in a manner for which the state will pay.

Blessedly, there is a loving abundance of care and caretaking in nursing homes. I've witnessed how this work is a labor of love for the women and men with whom I have had the honor to serve during my training. I've watched in their faces, and felt in myself, the constant stream of emotions that loving and caring for the stranger elicits: it is rewarding, fulfilling, challenging, difficult, exhausting, and thankless work.

And still, while we do not discuss it, we do not fool ourselves. We go home late at night or early in the morning anxious and worried, imagining our own futures. Like the CNA's who care for them, our residents ARE the poor: they are the ones on Medicaid and Mainecare who cannot afford assisted living or private in-home care. They are the definition of the Greek word elachistoi: "the least of these" as it appears translated in the gospel of Matthew 25:40--you know, one of those key parables where Christians are told "...whatever you did for one of the least of these brothers and sisters of mine, you did for me..."

The literal meaning of elachistoi is “the smallest or most insignificant ones," or, in another manner of speaking, the expendable ones.

What I've noticed in the nursing home staff, and in myself, is that our very often invisible, forgotten caretaking for these elachistoi is not some type of romantic idea or charitable act. It cannot be. It must not be.

For they are us. 

The Blessings of Fragility

 

I went to bed feeling blessed, with the wind roaring and the cold, cold snow still falling after a delightful blizzard dinner of roasted chicken, brussels, and glazed carrots. In other words, our power held!

How lucky we are to be warm, to be together, to be fed. There are too many who are alone tonight; who are cold tonight; who are unhoused tonight; who are unfed tonight. It really just takes every one of our efforts to inadequately try to be sure those with the least among us are cared for. We are blessed, too, to have that work.

And I awoke feeling our fragile and temporary it all is--and how this is at the root of our blessings. When we can hold it and not fear it (thank you, Thich Nhat Hanh). When we can love it and not have it make us angry. Especially in a nation in which anger seems often to feel like a birthright to the White settler-colonialist culture.

With the power still on, we watched the Sundance Award-winning film CODA last night. CODA stands for Child of Deaf Adults. The movie is a somewhat traditional, quintessentially "American" tale--a young woman from the working class fishing community of Gloucester, MA, overcomes all obstacles to attend a music conservatory for college--but it is beautifully done. The fishing details, the sense of place, are evocative if, as-ever, romanticized. There is also a remarkable scene where the filmmaker allows us to experience what it is like to be deaf in a hearing world. But it was the 17-year-old hearing protagonist's deep connections to her deaf family, and the conflicted emotions she feels in leaving them for music school, that resonated deeply with me.

I miss my mom and my dad. I wish I had been better able to cross the huge distances that developed between our lives as I came out, went to college, became an artist and an intellectual.

My dad was functionally deaf. He didn't lip read or use sign language, but did have a hearing aid in one ear which allowed him to hear enough to get by. But he couldn't stand being in crowds: the background noise was just too much confusion for him. And, like the family in CODA, he could not really hear live music. And my mom, for a variety of similar reasons of brokenness, did not like to go anywhere without him.

(c) 1987 Kathryn Kirk

They delighted in each other, in us, and our small, tight family. Our world was very small. 

Since my dad couldn't hear, they didn't attend all the concerts I was in nor any of the sporting or other events. As an adopted, queer kid wanting a bigger world, this just made me feel abandoned (although I could not give voice to that) and angry (to which I gave plenty of voice). 

My understandings of their fragilities and vulnerabilities came much too late. We spent years disenfranchised from each other, with sparse visits. And then, as they were older parents, they began to become ill and simply needed our love and care in return. While I was able to provide some of that, I too often resembled the son in the Harry Chapin song with which I grew up in the 1970's, Cat's in the Cradle.

Mae and Evert--like all of us, when we settle into it--were broken in their own ways. As mid-century White Americans, they were not married until their late 30's. Unable to have kids. One deaf and one with wayward eyes. First generation high school graduates of immigrant parents. And they had, and gave my brother and myself, many privileges as well--not the least of which is being White and educated in the U.S.

And love. And perhaps most importantly, they gave us their frailties: blessings on which to base our own development of compassion, empathy, and love.

#gratitude

#love

#blessings

#frailties

My Life as a CNA #2: Strokes and Insights

 

This photo, from the mid-1960's, shows my maternal grandmother, Mary Urban Endrich, standing strong as ever in the magical flower and vegetable garden she kept between her house and ours -- the pink ranch in the background.

I know this is the mid-60's because Mary is already somewhat diminished here. A giant of a woman in both personality and form, she began to have a series of small strokes -- today we would call them TIA's (transient ischemic attack) -- when I was four and five years old. The big ones that finally took her from us were in 1970-72; she was only 74 when she died, and I, whom she had taught to read and write and garden and work a farm stand, only 11. 

Mary in 1961 at her full, pre-
stroke size, greeting my
arrival.

The big strokes caused her daughters, my mother and godmother, to move her in with us. Fifty percent of the time she was in NJ with my godmother and her family, 50% of the time with us. She and I shared a bedroom, so at an early age I got a good look at the damage strokes can cause to our beloved people. Her inability to speak, her permanently contracted hands, her rapid weight loss, her shuffling gait.

The majority of residents in today's nursing homes are those with some form of dementia or stroke victims. And the majority are women. Many of these can no longer independently perform their ADL's (activities of daily living) and require nursing assistants to feed, dress, toilet, and bathe them. A good many are confined to beds, unable to stand or walk on their own.

As a family, we cared for Mary until her body quit. The body is a tenacious thing and, 50 years later as we have extended life spans, even more so now than then. We were also there full time to tell her we loved her, and to remind her of the good life she had lived. 

In this way, we were also there to help her to die.

As CNA's, we're here to care for every resident just like family. In the absence of family members, we toilet, feed, dress and exercise people in the last portions of their lives. Yet it is different today. There are nearly six million patients with Alzheimer's in this country, and within 20 years this number is estimated to rise to 55 million. Alzheimer's and dementia break the connection between a body and its memories.

Can we know how to die when we cannot remember that we have lived?

As a culture, as we've become increasingly disconnected from the natural world around us, the cycles of living and dying can feel removed from us. Watching a flower bloom and die, we are reminded of how temporary life really is. We all die so that others can be born.

I still miss Mary every day. She is a huge part of who I am. Until her last breath she would point to me and say "the girl is good" no matter what I did or how impatient I was. Her love for and belief in me was no small thing to have. While I would have loved for her to live to see me go to high school and college as she wanted, I'm really glad we could all be there to help her die in love and dignity. And I hope that by caring lovingly for our many elderly residents who can no longer speak, or walk, or eat on their own that we are doing the same for them.

#NursingHomeLife

#CNALife

#LivingAndDying