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22 April, 2015

Stages of Death

By Adam Roberts|April 22nd, 2015|end of life, Performances, stages of life|

Life lessons from the mortuary to the theatre

If you’re a Central Texan, chances are fairly good that you’ve seen Bernie, the dark Richard Linklater comedy starring Jack Black in the title role. I saw it with a friend a few weeks after the movie’s release and remember vividly the opening scene of Bernie’s return to his alma mater as a guest lecturer … on the process of embalming. My fellow audience members shifted uncomfortably in their seats and let out gasps of “eeew!” I, however, smiled quietly, for I knew what many of them did not: that the onscreen depiction of the process of preparing a body for viewing was spot-on.

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3 April, 2015

The Dead Giveaway | End-of-Life Planning Workshop

By |April 3rd, 2015|end of life, Legacy, Performances|

The TFAP artistic team piloted a performance, The Dead Giveaway: A Comedy in One Final Act, at an end-of-life planning workshop in collaboration with the Austin Jewish Community Center Senior Adult Programs department on February 27, 2015.

Photos by Audrey Long, ARCOS Films
Storyteller is Bernadette Nason

15 February, 2015

Death of my Father

By James Doty|February 15th, 2015|end of life, Poetry|

10 February, 2015

Voices From Five Rooms

By Mary Crescenzo|February 10th, 2015|end of life, Poetry, stages of life|

Five short monologues by Mary Crescenzo

William

I want to sleep in my own bed,
if you haven’t sold it at a garage sale.
I want the dog to come here
or better yet, can you take me home?
I want to sleep on the mattress
that only you and I have slept on.
I want music I love, not the MUZAK
that I pay for as part of the bill.

I want to sing a song without someone
in the next bed telling me to shut up,
telling me to keep it down,
I know I’m sometimes out of tune.
I want to eat a piece of cake and
wash it down with ice cream.
I want to look out the window
and recognize the trees.

You say, “You’ll be alright,” as if
you think you can fool me,
as if that makes it easier for you
to get through this disease.
If I could speak, I’d tell you:
death in here is not my last wish.
If I would have told what I wanted
for these last days, before my brain
lost its way, would you have listened?
If I could remember my way,
I’d follow the FOR SALE signs home.

Al

This is not how I imagined it, in bed, wrapped
in a blanket like a mummy, without memory,
without a health directive, without my hair
combed, without my dress shoes polished,
without my dress shoes on.

I was hoping for a walk down the street, no cars,
just a simple place to fall, like on grass, in my fine wool suit,
my shoes shined, and the look of tomorrow clear and on my face.

or on the dance floor, where the music of blood
rushes like the sea in my ears, and the love of my life
in my arms entwined in a Fandango,
thinks I’m getting fancy, doing a dip
as I lose my balance from the gushing secret in my head.

I told my daughter, I hope I die with my shoes on,
less trouble for everyone, but she thought I was joking,
she was just a kid, she didn’t understand
the advantage of surprise over helplessness.

No matter how much someone loves you,
they can’t stop you from dying, but if you have your shoes on,
if you’re lucky, they don’t have to choose a pair for your coffin.

This is not how I planned it. In this place, waiting
and wishing you could tell them to remove the food tube
from your stomach, the one that feels like a knife.

Lily

If this were home, dying would be easier,
even a fall down the stairs, descending
like a child’s rubber ball, bouncing and deliberate,
would have the grace of familiarity.

My arms flailing like tentacles, my veins
like indigo ink, calamari angel hair, al dente,
my teeth dropping to the bottom
of the deep blue stairs before I got there.

If this were home, flying would be simple.
I’d open the window, my night gown stiff
from blood, from old urine,
like stiff gossamer it would carry me

and I’d take wing with the grace
of a swan or a seagull at sunset,
my song, sounding, stretching, soaring
from familiar surroundings.

Alba

We all have a shadow box of objects
enclosed in glass
at the entrance doors of our rooms,
like relic boxes of the saints,
like the glass casket of mother Cabrini,
little coffins containing our former lives.
The aides wash us daily
like Neapolitans who lovingly cleanse the flesh
of their un‑embalmed dead, opening their coffins
six months after burial.
Our bodies breathe but we are embalmed
in a disease that breeds fear
and wonder.

I make the sign of the cross
blessing my art paper, lifting the brush
in my left hand before I place it in my right ‑
I am from a time when lefties were
forced to use their right hand, but now
it’s coming back to her.
That was a time when there was no name
for this disease, when people like her
were considered crazy or sick or lost.

I’d like to break the glass of my shadow box
and yell, Fire! and release my life,
now smoldering in the ashes of age.
I should have told you how I wanted these
last days to be, told you of my wishes for this
moment when all has been taken from me.
If I could, I’d run to the nearest exit
with all my regalia in hand
and pray to St. Anthony,
the patron saint of things misplaced,
for my soul.

Tessie

I really don’t like the color of this casket, brown was never my tone.
You know how I hate pancake make-up! Are you serious? Peach lipstick?

I’d never wear a dress like this, and what’s with the nail polish? Whose idea was that?
Wrong shade of hair color. I didn’t grow it out to white so you could dye it back to black.

I’d rather be buried in the forest with the animals that I love. Under a tree without concrete and steel. Beneath the sky, serenaded by the birds and the wind above.

I think I’d heard about this new kind of thing, called something like ecological disposal
of remains. Away to return to the earth, a cradle, where we become one again.

But I never told you, I thought you wouldn’t listen, I thought you’d feel I was weird,
and you’d get all depressed, then give your opinion, then argue amongst yourselves.

Now, here you all are leaning over me, loving me. Long overdue. Saying things like,
“She looks lovely,” while the room smells of flowers, a sure think that death has arrived.

I know you loved me, but you never really said so. So many things we never discussed.
And, it’s true, I loved you, but I was just as guilty of keeping it all inside.

Now there is no inside, its all out here, laid out on ivory satin with a diagonal ribbon draped in the open lid with the words Rest in Peace, like I’m some kind of beauty queen.

Here I lay, my legs hidden, covered with a half-lid, like a wooden blanket from the waist down, stiff, drained, and plumped up, like a blow-up doll with features painted in place.

I should have told you, or written it down, how I wanted to make my exit. I know
this fanfare is for you, you need this, but now I’m all dressed up with nowhere to go.

12 January, 2015

An Early Frost

By |January 12th, 2015|end of life, Poetry|

An Early Frost

Once again they’re alone,
like in the beginning,
only now it’s winter and
the backseat of their car
rides emptied, a painful
reminder of an early frost,
her last breath still resting
warm on their icy cheeks.

And now, but for the rattle
of a loose tailpipe
that always gripes over
the last frozen mile home,
there remains no hint
of a previous season,
though the animals
seem to know, bowing
their heads each time
the tailpipe announces
its return.

30 December, 2014

Legacy

By Julie Smith|December 30th, 2014|end of life, Legacy|

Here at The Final Acts Project, one of the words we like to use is “legacy.” It’s a big, fancy word. We’d all like to leave our legacy. But what exactly does it mean, and why is it important?

I believe that “legacy” means capturing the essence of an individual’s life, the part of a person that will live on beyond death. Sadly, the full richness of a person’s life is often not on display until a funeral service, where an entire personal history is recalled by loved ones in a special ceremony. Isn’t it strange that often, we wait until someone has died to honor his or her life and give it the remembrance it deserves?

Because our society is often uncomfortable discussing death, focusing on someone’s legacy also may be neglected. No ceremony highlights someone’s legacy until that person has achieved an advanced age, is gravely ill, or has died. With our mortality in mind, it is natural to recognize the legacy of our dearly beloved family and friends sooner, as well as defining our own legacy. Certainly, our accomplishments and the way we act toward others convey our deepest held values and beliefs. But it’s often hard to describe a person’s legacy, the wake left by one life’s passage that continues to ripple outward long after the person has died.

Here’s where the creative arts can help. We may not all be artistically gifted, but we are all creative by nature. Creative expression has many forms: drawing or painting; decorating; building a handmade craft; journaling or writing a letter; creating jewelry; or making a collage, or a photo album. Some people can express themselves through singing or playing an instrument. The arts are a wonderful way to recognize the impact that someone else has had on your life, as well as to create something that expresses a deep desire within you.

One way I have tried to be creative in recognizing the legacy of my loved ones is by writing them “agape letters” (agape is Greek for love). In the letters, I have written those things that I would want my family and loved ones to know if they were on their deathbeds. Someday, they will be gone. So why wait?

22 December, 2014

The Anatomy of Loss

By |December 22nd, 2014|end of life, stages of life|

Merriam-Webster’s dictionary defines loss as “the failure to keep or to continue to have something.” It also defines loss as “the experience of having something taken from you or destroyed”. Clearly, loss is not only defined in different ways between individuals, but between diverse cultures, and it can vary greatly over vast stretches of time. And how we each respond to loss is distinctly unique from individual to individual.

For me, loss has always been a phenomenon that is both simultaneously real and ethereal. There is this mystifying duality I must confess I’ve never understood very well. In my world there is the abstract, and then there is the concrete, where boundaries of loss are simultaneously sharp and porous, delineated and amorphous, here and there. It reminds me of floating bubbles – in your hand one moment and gone the next.

The last half of the twentieth century has slowly changed how we perceive and experience loss. Loss through death has been made less visible, less personal and less accessible for family members. New medical technologies, combined with society’s demand for cure and medicine’s promise to extend life, have collectively, perhaps even unwittingly, conspired to push loss into the remotest corners of our lives. We find it much harder to touch, talk about, and have some measure of control over what is an everyday possibility and occurrence. Loss as one of the most defining moment in our lives, and yet we are left chained to a culture of silence. This new reality does not represent the historical reality of our society, of any society. The chains are contemporary, and they are of our own making. My best guess is that we must all work together to discover the key that will unlock this silence.

In her final moments, my mother was a floating bubble. I knew it was a matter of time before she would simply disappear before my eyes. I could see it coming, yet I couldn’t wrap my grieving brain around it. I trailed her every move, I tracked her every breath. I kept talking to her and combing her hair while my brother sang ever so tenderly into her ear. I knew her bubble would not last much longer, yet I kept chasing it around the room. I also knew the world would fracture and swallow me up once she drew her last breath, and it did for a while, a long while. Knowing I could not continue to hold onto someone I loved more than life, I slowly realized that loss is not always bad thing to experience, or even a bad feeling to sustain. Loss has its own complex beauty, and it allows me to fill the void that once inhabited my mother’s beautiful bubble. In my heart, she still floats.

19 November, 2014

Avoiding Difficult Conversations

By |November 19th, 2014|end of life|

Some say the best way to avoid a difficult conversation (like end-of-life care planning) is to ignore it until it goes away (my mother was brilliant at this strategy). My personal experience has taught me that if we ignore the end-of-life conversation long enough, it will indeed go away, and with little help from us. After a lifetime of observation, I feel fairly confident in saying that many of us expend a great deal of energy trying to avoid the topic of death, and the preparation required for the final act of our lives. It’s not an easy conversation for most of us to have, not even for those of us who work, study and write about it. We occupy our minds with everything but that which needs to come to us more naturally, more easily. We push hard conversations and challenging thoughts to the remotest corners of our minds, then quickly rush out the door and lock it away from our consciousness.

But end-of-life challenges always come knocking on locked doors, even if we trash the key. Both of my parents struggled to talk about end-of-life issues, particularly my father. Death and dying were things that happened to other people, not our family, and the thought of preparing for the eventuality of death signaled defeat. It took many trips and conversations with my father before he would finalize his advanced care directives. He had always been very uneasy with the idea of dying because he knew it was not something he could control (I should add that I seldom drove the car when Dad was in it, because he was not in control). But the one thing my father did know, and was quite successful at achieving, was dying in his own home with the support of Hospice, with his family by his side. If he had to go, by golly, it was going to be in an environment he loved and was familiar with. He left rehab after a severe illness with the rehab team to decide what would be needed in the home for support once his rehab was finished. He sat down in his favorite chair and refused to go back to rehab. He never left his home again after his personal “sit-down”. He had grown accustomed to the difficult conversations and had finally made up his mind – the final and most important act of power he had left in his rapidly weakening body. I applaud my father for knowing, when the time came, exactly where he wanted to be when it was his turn to go.

May we all fear less the difficult conversations.

9 October, 2014

Writing a Final Script 101

By |October 9th, 2014|end of life|

What we don’t learn at home about the logistics and benefits of self-empowerment through end-of-life care planning, we are even less likely to learn at school, in the workplace or in our house of worship. When it comes to writing the final script of our lives, clearly one of our most important, we are more often than not simply left to our own solitary devices.

But how can this be when we are learning how to write almost every other kind of script, for every other stage in our lives? How does this make sense? Why does one of the most important narratives of our mortal lives receive such neglect by our society?

I think we can all agree that our fierce stubbornness to avoid the end-of-life conversation at all costs is not that unusual, but it is certainly not a very helpful strategy for a successful plan of action. So how does one go about learning the craft of writing their final script? Where does one begin? The task can feel overwhelming, and because of that, it is often postponed until it is too late – another missed opportunity.

There are a few things to remember once an individual decides to author their final script. The first thing to remember (and this is important) is that no one has the right to hijack another person’s story. The script one chooses to write belongs to the person writing it. Exploring options and ideas with family, friends and professionals can be extremely helpful and affirming, but the script is still ultimately owned by the author.

The second important thing to remember is that decisions and conversations are ongoing and can be reversed, respected and reversed again. It is an evolution of dialogue with one’s self, and with those we love. Indecision is normal and does not necessarily signify a lack of desire to build the best path. What works best at one point in time for someone may radically change at another.

The last and most important thing to remember is that there is no right or wrong answer. This is not a test. It is a process of self exploration, clarification and visioning. And it’s helpful to remember that the end-of-life care planning conversation belongs to anyone who wants to have it – family, friends, physicians, nurses, faith leaders and, yes, even children.

19 September, 2014

The Funeral

By |September 19th, 2014|end of life|

One of my most vivid memories of early childhood is that of my ancient great-grandfather. For months on end the wraith-like minister would sit in the same upholstered chair holding onto a battered cane while staring off into a space in the house as empty as my pockets. Great-grandfather finally decided to finish dying when I was almost five years old, but not before he announced to all within earshot that no one can truly know what awaits us beyond our mortal lives. This is where my grandmother (his daughter) stepped in to assure everyone that he was no longer lucid. The mystery of his parting words will forever remain locked away from those of us who were left behind.

It snowed the day of the funeral, the only beautiful thing to happen that day that I can recall. Much to my chagrin, I was left at home with a flatulent aunt from Kansas, whom I had never met. Prone to pneumonia from birth, my mother decided aunt-what’s-her-name’s stench would do far less harm to my lungs than the cold. I felt utterly abandoned. Boxed with anger at being left behind, I refused my aunt’s feeble attempts at conversation. But I was mostly angry with my older brother, who was allowed to attend the funeral while I was left behind with no-name-gassy-aunt from the flatlands. A mere thirteen months older than me, and yet he was allowed to attend my great-grandfather’s funeral. I was infuriated.

After the family returned home, I took advantage of the emotional chaos and cornered my older brother in the kitchen. Never one to miss out on an opportunity to educate an exasperating younger sister, he grabbed my hand and pulled me away from the commotion in the kitchen to explain the facts of death and dying. A child himself, and he’s stuck with the dubious honor of shattering my mutton-headed innocence with all the facts of life and death he could muster. Quite abruptly, my brother said, “You couldn’t go to the funeral because mom said you would get sick, and you would have been bored anyway.” With knowledge comes disappointment.

However, his answer wasn’t good enough, and so I pressed on and asked when great-grandfather would return home. My brother said something traumatic like, “never”. Never?! Madness! How can a person disappear and never return? My brother continued, “Sis, you just die and go away forever.” My brain hurt with confusion. I felt a rage building against an unfamiliar force called the end-of-my-mortality grow inside of me. I didn’t know who or what force to be mad at, but I was definitely angry. I informed my brother that I would never die, that I had always lived, and that no one could ever take that away from me. In his young professorial way (yes, he’s now a physician), he calmly assured me of death’s eventuality and walked away. Shaken, and in emotional free-fall, I sat atop our basement steps and stared into the dark abyss, wondering when death would try to snatch me up and take me away from the people I loved. But over the years, after spending large amounts of time on my grandparent’s farm in the Midwest, I learned to come to terms with the cycles of life. Animals were always coming into and exiting the world, and so were members of our family. And my brain slowly stopped hurting and started accepting.