THE NATURAL ACT OF DYING
Presented by Katrina Phelps
Unitarian Universalist Church of Bowling Green
March 7, 2010
The Natural Act of Dying: it almost sounds like an oxymoron. Every fiber of our living, breathing mind and body seems programmed to fight death. We have both intensely primitive and highly refined survival instincts. We want to live.
I chose to talk about dying today because my mother is dying. Of course, in a very real sense, we are all dying, but she knows exactly what she is dying of and approximately when she will die, which will be measured in months rather than years. Last October she was diagnosed with pancreatic cancer. The tumor in her abdomen was determined to be inoperable because of its location and the fact that the cancer had spread to her lungs.
This was not the first time my mom faced cancer. She had breast cancer at the age of 39 and happened to be in the right place at the right time. She lived in Madison, Wisconsin, and an internationally renowned oncologist at the University of Wisconsin Hospital put her in an experimental study that aggressively treated her cancer with radiation and chemotherapy that was cutting edge at the time. She was very sick, but she survived it, and after her 5-year check-up she was told that statistically speaking, it was highly likely that her treatment bought her 25 years of life post-cancer. Exactly 25 years later she was diagnosed with a new, unrelated form of cancer.
My mom is 65 and otherwise healthy, so this came as a shock to all of us. She and my father both retired several years ago and were just getting into a groove of book club, caring for their rabbit, volunteering at local elementary schools and spending summers at their cabin in Door County. They thought they had time to grow old together. I have one sister and no aunts, no uncles, no cousins. Both of my parents are only children. My only living grandparent is my mom’s mother. We are a very small, close-knit family.
I want to share with you today my steps so far steps along this journey of living with dying. And I emphasize the word “living” because, of course, everything that comes before the moment of death is still living. And for some people, it can be a hyper-acute form of living, one that is charged with gratitude, authenticity and clarity even as health is deteriorating. Sometimes minds remain alert as bodies become frail and sometimes minds become frail before bodies begin shutting down. Every journey is unique and has its own challenges and blessings.
I cannot speak from the perspective of someone who is dying. I have not walked in those shoes yet. But I am watching and listening and learning from my mother and other teachers around me, so that I may be a good companion for all those I will be with and comfort when they are dying. And so that I, too, may live well and die well through their grace and their gifts to me.
There are three blessings that come from my mom’s dying that I want to use as anchors in this conversation. And I realize that sounds like an oxymoron, too— using the words blessings and dying in the same sentence. But hopefully, after I share some of my thoughts you’ll believe the sincerity of my gratitude for all that is, just as it is.
The first BLESSING comes in the form of a CLEAR PATH.
Within a twelve-week period my mom got very, very ill, had many tests taken, was diagnosed first with a tumor and then with pancreatic cancer, was told it may be operable and curable, and then, after further testing, was told it was inoperable and terminal. While this was devastating news, and truly surreal information for a period of time, it laid out a clear path for all of us. My mom needed to prepare herself for the end of her life. We, as a family, needed to be with my mom, to help her and love her as she was dying and to find our own peace with our goodbye. Those were our jobs and we had no choice in the matter.
We still have hope. We hope for enough time and good health to make more memories together, we hope for good pain management, we hope for humor to be mixed in with the tears, and we hope for a peaceful end. We are not without hope. But we are not focused on holding onto life; we are focused on making dying the best that it can be. We have the gift of knowing that our time together is limited and every moment should be cherished.
In the reading I’ve done on the topic of dying and in conversations I have had with others, I have come to appreciate how complicated the dance between fighting for life and surrendering to death can be.
Forrest Church, in his book Love and Death, wrote “From the moment I first got sick, well-meaning people have been peppering me with cure-alls. I should go to Stockholm or Mexico City to avail myself of some brilliant doctor’s cure. I should try this herb or that diet. Well-meaning individuals sent me doubtless very fine books with titles like Remarkable Recovery and How to Fight Cancer and Win. Or they tell me what page to crack my Bible open to Psalm 103 promises that ‘God heals all diseases.’ And the New Testament assures us that ‘with God nothing shall be impossible.’
“In short, if I die, I fail. That’s the bottom line for all such thinking. If I die, I didn’t fight smart enough. I didn’t expect a miracle.” (p.118)
I was very moved by a definition of healing that I heard presented by an oncologist named Jeremy Geffen on a CD entitled “The Heart of Healing.” To me, it captured perfectly the balance between doing everything you can and hoping for health, and yet accepting that death may be the way of your path. As he says, “At the end of the day, we are really not in control.” I’d like to play for you the segment he recorded on this CD. (TRACK 1)
What is the heart of healing? The heart of healing is found in focused action and intention wrapped in the arms of surrender. Focused action and intention wrapped gently in the arms of surrender. Not only for patients and their loved ones, but also for those of us who have devoted our life to the service of healing. To remember even in our work of service, at the end of the day we are really not in control. All we can do is bring our love, our presence, our intent to be with what is happening. To smile with love if we can, to take action whenever we can, and to try always to have our actions and our intention and our efforts wrapped in the arms of surrender and gratitude.
I keep his words near me as I spend time with my mom. “The heart of healing is found in focused action and intention wrapped in the arms of surrender.” We do what we can, but we understand that letting go is part of what we must do. And we gently try to prepare ourselves to surrender to the naturalness of dying.
The second blessing that has come from my mom’s illness has been a profound RE-FOCUSING.
It is true, at least in my experience, that living with dying strips away the petty and the unimportant very quickly. Suddenly, the furnace that is acting up or the hair that needs trimming or the orange juice that spills across a pile of papers on the table, or even the nagging head cold that won’t go away become tiny, tiny problems. It’s like in movies, when the camera pans out and you get a much different perspective on the scene in which you were just immersed. Dying awakens us to life’s preciousness and also its fragility. It makes us take stock of what really matters to us and ponder existential matters.
Again, I quote Forrest Church from his book Love and Death: “Death is central to my definition of religion. Religion is our human response to the dual reality of being alive and having to die. Knowing that we must die, we question what life means. The answers we arrive at may not be religious answers, but the questions death forces us to ask are, at heart, religious questions: Where did I come from? Who am I? Where am I going? What is life’s purpose? What does this all signify?
Death is not life’s goal, only life’s terminus. The goal is to live in such a way that our lives will prove worth dying for. This is where love comes into the picture. The one thing that can’t be taken away from us, even by death, is the love we give away before we go.” (p. x)
He goes on to recall that after receiving the news of his cancer’s return, a longtime parishioner, who had known her full share of death, wrote him of her heartache. “My heart has been broken again,” Camille wrote, “and for that I am overwhelmingly thankful; without love, this would not be possible.” (p. xi)
The Israel Museum in Jerusalem contains a collection of tiny ceramic cups. These were sacramental vessels. People cried into them. Whenever your heart was broken and you burst into tears, you would pick up your tear cup, put it under your eye and weep into it. When you are finished weeping you would cap it and put it away again. It was a way to save your tears.
Why save them? Because they are precious; they show that you care. The fuller one’s cup, the more a person was esteemed. Great-hearted people, apparently, cried far more readily than small-hearted people. Life touched them more deeply, not only the pain of it, but also the joy. They wept into their cups of tears until they truly could say, “My cup runneth over.” (pp. 37-39)
It takes great courage to love because loving means risking losing everything we hold most dear. When we love we place our heart in jeopardy; the world as we know it can turn upside down in the time it takes to pick up the phone or answer the door and hear life-changing news. Love can be grief’s advance party.
But love and death are also allies. When a loved one dies, the greater the pain, the bigger the love that came before it. In a very real sense, the depth of our grief testifies to the power of our love. And love lives on long after death separates our physical bodies from one another.
It can be difficult to appreciate the love, joy and beauty in your life when you or someone you love is dying. It’s easy to get stuck in feeling angry or depressed or hopeless. It seems like the things we want the most are the things we can’t have: health, more time, less fear, grief or pain.
Forrest Church provides a wonderful analogy of our self-defeating tendencies. He says,
“The glass we look through onto the world is like a lightly stained glass window. Each pane looks out onto some aspect of our life: our vocation and avocations, our spouse or companion is we have one, our parents, our children, our health. At any given time, some of these panes are likely to be rosy and translucent. We can see through them clearly and their tint casts a gentle glow on the prospect we look out on. My wife is happy. My children are doing well. My friends are there for me when I need them. I enjoy my job. And my hobbies invest my free time with meaning. Imagine, however, that one pane in the window that looks out over our life suddenly grows cloudy. What was translucent becomes first opaque and then almost impenetrable. The tendency is to press our nose up against that one frame, desperately trying to see through it. When we do this, we lose all sense of proportion. Our entire world goes black.
“How easily this tendency can kick in when we are dying. The once clear pane of our health, which we rarely bothered admiring the view through when all was well with our bodies, goes dark, and we can see nothing beyond our sickness. With our nose pressed up against the one frame we can see nothing through, all other lights go out. We then invest our life’s meaning in what may be impossible, namely beating our sickness.” (p. 32-33)
Church relays a mantra he developed years ago that he claims has served him well both in health and in sickness:
Want what you have.
Do what you can.
Be who you are.
“Wanting what we have,” says Church, “mutes the pangs of desire, which visits from an imaginary future to cast a shadow on the present, which is real.” Of course this is a Buddhist framework, to accept things as they are, including the impermanence of all things. “Each day that I am sick,” says Church, “I pray for the sun to come up, for people to love me, for manageable tasks that I can still accomplish, and for a little extra courage. Pray for the right things and your prayers will be answered.” (p.34)
His mantra again:
Want what you have.
Do what you can.
Be who you are.
Doing what we can focuses our minds on what is possible, no more, no less, so we may fill each moment with conscious, practicable endeavor. And being who we are demands both forgiveness, which is often a difficult thing to extend to ourselves, and integrity, which includes being straight with ourselves and with one another.
The final blessing is sort of a bridge between being who you are and doing what you can. I consider it LESSONS IN COMPASSION.
Since my mom’s diagnosis, I see acts of loving-kindness all around me and find more and more opportunities to engage in exchanges of kindness. My own pain helps me to connect with others who are suffering. I am a better listener; I am a more alert and grateful learner. I am attuned to the transformative power of simply being present.
I’d like to play one more selection from the CD “The Heart of Healing” entitled “Being Whole,” by physician and author Rachel Naomi Remen. She speaks to the importance of accepting who you are—your whole, imperfect self—in order to be truly present to the needs of others. (TRACK 7)
Being whole doesn’t mean being more than who you are at this very moment. It means BEING who you are this very moment. It means accepting the parts of yourself that used to make you ashamed of feel small. These are the parts of yourself that will allow you to connect to other people, allow you to own your own strength. I have noticed the wounds that I have suffered in 50 years of chronic illness enable me to respond to other wounded people with compassion.
Without them I don’t think I’d know compassion and neither would you without your wounds.My loneliness, which is part of my wholeness, has helped me to find you in the dark. To sit with you, be with you, care about you. And when I was not willing to allow myself to be lonely, to know that I needed other people, I would never have been able to sit here with you and find you. And I was less than whole without my loneliness, without my wounds. This is part of wholeness, too, for you, for me, for everyone.
Every one of us wants to be more than we are, wants to give more than we can give. Something in us, in our training says that says only perfect is good enough. This is an absolute set up for burning out.
Each one of us, you and me, we are already enough, we are already exactly what is needed. The ways in which we are human, our anger, our doubts, our fears, our loneliness, all of these things are exactly what is needed.
Most of us have blessed and helped many more people than we know. I might just be exactly the right person for the person in front of me. Not because I am trying to be the right person, but because I really am the right person. To offer them a reminder of their wholeness, to evoke their strength, just by who I am, by my presence, in ways that I may never know about. It is not our expertise that blesses people, it is out humanness.
“It’s not our expertise that blesses people, it’s our humanness.” That is the truth. My mom doesn’t benefit from my professional degrees, but she is fueled by my love. There was a single, pressing thing I felt I needed to tell her as soon as we found out her cancer was incurable. I needed her to know that the one achievement I am most proud of in my life is the two children I have raised with my husband, and how much love they radiate out into the world. This accomplishment flows directly out of the love she and my father bestowed upon me and the parenting I saw in action as a child and young adult.
Her legacy, in part, lies in vibrant, loving children and grandchildren who will carry and share her love for generations to come.I feel like I am absorbing from many sources how to be present with life-threatening illness. I am blessed to have many amazing teachers around me who are so full of life it is hard to remember sometimes that they are suffering.
You know many of them. I cherish my friendships and heartfelt conversations with Peggy Steele and Nolen Porterfield. My friend, Betsy Shoenfelt has been kind enough to share with me her experience of losing her mom to pancreatic cancer. I give and receive abundantly from my neighbors, Mike and Ann Moore. Recently, I have had the honor of spending time with Cindy and Frank Snyder and Susan Johnston and Vicki Metzgar.
We share intimate details of our personal journeys and are buoyed by being together. The sharing is a salve for our individual fears and pain. We care, we provide comfort and we commiserate with one another. We bring our strength and our weakness to the table. And our joys, of which we have had a perfect, almost miraculous trifecta since we’ve been gathering, are magnified within the circle of our shared hearts.
Forrest Church claims, “Whenever a trapdoor swings open or the roof caves in, don’t ask ‘Why?’ Why will get you nowhere. The only question worth asking is “Where do we go from here?” And part of the answer must be “together.” Together we kneel. Together we walk, holding each another’s hand, holding each another up. Together we do love’s work and thereby we are saved.” (p. 82)
I have stopped worrying about what to say to people I care about when bad things happen to them. I know to avoid saying “It could be worse,” or “I know how you feel,” the first of which rarely makes anyone feel better when they are miserable, and the second of which is rarely true.
If I speak the truth of how I am feeling, of my compassion and my shared sadness, it is enough. And I must do that. Having been through times of crisis myself, I know the value of a card with one or two thoughtful sentences on it—or a phone call or a visit. I know that a father whose 19-year-old son who has testicular cancer wants to be asked, How is he? What is happening? How are you doing? What can I do?
More often than not, what is needed is to listen, not to speak. To sit gently on the side of a hospital bed or across the table at a restaurant and intently listen to shared bits of life, stories from the past and trials of the present. It is always, always as gratifying to absorb the stories that someone shares with you in an intimate context as it is to be the talker. As a youngish person, I feel honored when someone older than I am cares to share his or her journey with me. I have so much to learn from others; they are such wonderful guides.
I believe that what is most needed in living with dying is presence: your love, your caring. All these things that you might not think are enough, are exactly what is needed. And because this is a church setting I feel like I can add one last idea from Forrest Church that resonates with my religious leanings.
“The surest path to God (the Sacred or the Holy) is to follow not the logic of our minds but the logic of our hearts. All of us suffer. We are broken and in need of healing. We struggle to accept ourselves and forgive others. Aware of our imperfections, we seek more perfect faith, hope and justice. At our best, we feel our love in others’ hearts and rise together in answer to the urgings of conscience. We discover the Holy— its healing and saving power—by acting in harmony. Remember, God is simply our name for the highest power we know. If we define God as love— as good a definition as any—we discover God’s nature in our personal experience of love. This may not mean God is actually love, but it certainly suggests that love is divine.” (p.124)
In conclusion, I’d like to offer the observation that the three blessing I chose to highlight on my journey of living with dying were, broadly speaking, circumstance (what I called a clear path), perspective (what I called re-focusing) and action (what I called lessons in compassion).
Every challenging aspect of our lives has these elements in common: circumstance, perspective and action. We cannot avoid adversity, but we do have a choice as to how we will respond. And we can choose to learn from and value our pain and losses as well as treasure our love and joy. Death and love are allies. The measure of our grief is a testament to the power of our love.
I am not a painter, but my husband is and I marvel at the process. In any given painting, there are layers of work, of color, of texture, of images and design. I like looking at a piece after he’s spent hours toiling away and trying to discern what is new, what he has added, what direction he is going and how it’s going to unfold. Sometimes I like his new additions, and sometimes I liked it better before he changed it.
The catch is, of course, that there is no going backwards. You always have to incorporate the new into the old and work with what you have done. And at some point you have to stop. You have to put away the paints and brushes and be content to find your joy not in the process anymore, not in the creating and the dreaming of what it might be, but simply in what you have experienced, and in what it is now a static piece of work that documents your love and your passion during a period of your life.
I think it’s possible to make an analogy to human loves in our lives. We never want to stop making new memories with them, adding fresh images to the canvas. But at some point, it always has to come to an end. We have to find peace with the record we have generated, in our memories, in photos and letters and shared families. We need to embrace the transition from living in the flesh to living in the heart. It is still a kind of living. And death, after all, is a non-negotiable natural act. In the words of Mary Oliver,
To live in this world you must be able to do three things:
To love what is mortal;
To hold it against your bones knowing your own life depends on it;
And when the time comes to let it go, to let it go.
A Common Destiny
All living substance, all substance of energy, being and purpose,
Are united and share the same destiny.
All people, those we love and those we know not of,
Are united and share the same destiny.
Birth-to-death we share this unity with the sun, the earth,
Our brothers and sisters, strangers,
Flowers in the field, snow flakes, volcanoes and moon beams.
Our destiny: from unknown to unknown.
May we have the faith to accept this mystery
And build upon its everlasting truth.
David H. Eaton
The Larger Circle
We clasp the hands of those that go before us,
And the hands of those that come after us.
We enter the little circle of each other’s arms
And the larger circle of lovers, whose hands are joined in a dance,
And the larger circle of all creatures,
Passing in and out of life, who move also in a dance,
To a music so subtle and vast that no ear hears it
Except in fragments.