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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.

16 December, 2014

STAND THERE! It’s Okay

By Cheryl E. Woodson, MD, FACP, AGSF|December 16th, 2014|Chronic illness, Medical profession|

Medical training prepares us to react to acute illness. We learn to use technology to do something, expecting to cure, snatch people from the jaws of death, and restore their health. This has made many people think we’re superheroes. Sometimes we find ourselves buying into that adulation, then we wait for the next acute episode, poised to use more technology, but most of us are at a loss when our capes become tangled in the cycle of chronic conditions.

Today, the challenge of American health care is chronic illness, for which there is no known cure. The goal of chronic disease management is to keep people as independent and as comfortable as possible. We strive to avoid acute flares, and the hospitalizations that often follow, because technology isn’t the always the answer. When chronic illness takes its inevitable path to the end of life, the goal is a comfortable, dignified death. Yet, all too many of us in medicine have allowed technology to put blinders on us. We see success only in terms of cure, view death as failure, and frequently insist on using technology far beyond its utility. The last thing health care practitioners should be doing as chronically ill patients are transitioning out of this life, is leave them feeling more wounded.

The practice of medicine involves cutting-edge science AND sound clinical judgment. When we do something without considering the long term implications for the patient, we fail the patient. Instead of just focusing on diagnoses, we need to individualize therapy, making sure that our actions improve function, comfort, and quality of life for that specific patient. Once we accept that CARE is as valuable and as prestigious as CURE, we’ll be able to stop using technology when it becomes an instrument of harm. We’ll realize that when we just STAND THERE, we’re still engaged in important activity. Offering comfort and being present is heroic, too.

13 December, 2014

The Contrasts of Life

By Julie Smith|December 13th, 2014|stages of life|

Life can be seen as a series of contrasts. Everywhere, the rhythms of the natural world are evident, from our breaths (in-out), to our heartbeats, to the waves of the ocean. The light, and dark, the changing seasons, joys and sorrows – it seems we come to know each experience most intensely by also knowing its opposite. Could one even exist without the other? Would light have any meaning with no darkness?

It’s ridiculous to think of breathing in, forever, never letting a breath back out again. But somehow, that’s often our mindset when it comes to life and death. We are enjoying the in-breath of life so much, we forget that the out-breath of death is required to make the experience complete. We forget that our lives have a start and an end point. Life seems to stretch out, on and on, and touch infinity – doesn’t it? We trick ourselves into believing that we really can take one long inhalation, and the time will never arrive when we must exhale.

We may be able to fool ourselves into believing that life goes on forever. However, the fact remains that our life is a cycle. We begin in a watery womb, burst out into the world for an unknown span of time, then take our leave. If we really could live forever, would our lives have the same depth of emotion and the same meaning? I think not. Life’s meaning is captured in contrasts.

I have a radical proposal: Death gives meaning to life. My death, when it comes, will be a gift, because it will illuminate the importance of my life. My life is not a permanent or unchanging event. My time here is precious! I wish more people acted with a mindfulness of their own mortality. Perhaps we would spend less time on petty bickering, or on unimportant activities. Maybe we would be more openly affectionate with our loved ones. We would put aside our differences more readily, knowing that there is only a limited time to achieve goals.

If you knew you were living the final days of your life, would you behave differently?