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.

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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.

The post The Anatomy of Loss appeared first on The Final Acts Project.

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.

The post Avoiding Difficult Conversations appeared first on The Final Acts Project.

There are so many wonderful memories of her I carry forward as a sustaining force in my life. She was the best cinnamon toast maker in the family; she never flinched when I had to give her a B12 injection, and she could be a ferocious worrier (a habit she mysteriously bequeathed to me). I not only keep her poems safely tucked away for the next generation to enjoy, but wear her simple gold wedding band on my hand as a daily reminder of her story, which has now become her legacy, and a part of mine. May she live on, and on, and on…

The post The Poet’s Legacy appeared first on The Final Acts Project.

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.

The post Writing a Final Script 101 appeared first on The Final Acts Project.

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.

The post The Funeral appeared first on The Final Acts Project.