*photo: Laurice Brooks outside his home the day before his wife Betty died
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Everyone in my church is dying.
I don’t mean that as an exaggerated statement. I mean it literally. We all will die. We are all on our way. Unless Jesus returns within our lifetime, everyone is dying.
Now, admittedly, we’ve had our share of funerals and memorial services recently. And there have been a string of deaths that hit close to home—people whom I loved and they loved me back. The most recent was Betty Brooks. I’ve known Betty, her husband Laurice, and their son Danny since I was a child (Danny was one of my best friends in school).
When Betty was diagnosed with cancer, I went to visit her in the hospital. Her diagnosis was bad, as in… you don’t have much time left. She surprised me by how accepting she was of the news. She shrugged her shoulders, chuckled, and said, “I’ve lived. What are you gonna do? I’m ready.”
In the hospital, I held her hand and prayed with her. I told her that she’s beautiful and I said, “Betty, I want to be like you.” Betty laughed again and said, “Me? Why?” I said, “Because you are fearless.”
Just a few weeks later Betty was back in her own home receiving hospice care. The day before she died, I went to see her again. This time she was in and out of consciousness. She didn’t have the strength to speak. She looked at me and I’m pretty sure I saw her eyes smile. I sat next to her, holding her hand for a while. There wasn’t much to say. Eventually, we gathered around Betty and prayed. I said goodbye, knowing it was probably the last time.
Laurice walked us outside and we talked for a few more minutes. I took his picture, wanting to remember the sacredness of this day.
When Betty died, even though I knew this was coming, it wore on me. I complained to Shari, “I’m tired of death.”
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I’ve been reading a book called Spiritual Journeys – An Anthology of Writings by People Living and Working with Those on the Margins, compiled and edited by Stanislaus Kennedy. When I came to a chapter titled “Hospice: A Prophetic Movement” by Sheila Cassidy, I decided I was going to skip it – because I’m tired of death. But then I was curious about how hospice could be prophetic and I ended up reading (and loving) the chapter.
We are in Lent right now… rapidly approaching Good Friday and ultimately anticipating Easter. It is a time of honest reflection – thinking about life and death and resurrection. Reading this chapter about hospice care seems to be appropriate for the season. It has me thinking about the frailty of life, the nearness of death, and the possibility of life from the ashes.
I’m also contemplating the analogy of the church as “a hospital for sinners,” and wondering if perhaps hospice care is speaking prophetically to what the church should be.
Maybe Sheila Cassidy’s words will speak prophetically to you too.
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(Hospice: A Prophetic Movement by Sheila Cassidy – edited for brevity)
I moved from the cancer wards of Plymouth General Hospital to become the medical director of a small hospice for the dying. My work at the hospital already involved a good deal of terminal care, so when I was offered the job at the hospice I did not see it as a dramatic change of direction. In the years that followed, however, I have become aware that hospice has come to stand in prophetic relationship to the mainstream of medical care.
In consideration of the prophetic role of the hospice movement it is important to be clear on the meaning of the word prophet, for it is often misused and therefore misunderstood. Prophets are individuals or groups of people who are called both to listen and to speak out. They must listen to God, to the signs of the times, and to the cries of the oppressed, and when they have understood the message, speak out, whatever the personal cost.
Prophets are no holier than anyone else.
They are frequently very wounded people, but like Jeremiah or Isaiah, they put their woundedness at the service of God. When they hear the message that says, “Whom shall I send? Who will be our messenger?” to their horror, they find themselves answering, “Here I am, send me” (Isaiah 6.8).
Prophetic messages are, almost by definition, unwelcome, because they challenge the status quo.
Perhaps, like the prophets of old, we are the spokespersons for the oppressed. We listen to the cries of the people and try to speak out for them. We realize they want to be treated as normal, responsible people. They want to retain their dignity as individuals and keep some control over their lives. They want us to be honest with them, warm and humble. More than anything, they want us to combine our competence with compassion and, when our hands are empty, to stay our ground and share the frightening darkness with them.
More than anything, they need our love.
What makes hospice different from the hospital is the philosophy of the hospice movement. It is a philosophy based upon the conviction that people, all people, however far gone, are infinitely precious and their treatment must be tailored to their individual needs.
In the hospital, we provide high-quality treatment to the tip of the human iceberg: we diagnose disease and try to cure it. We attend to the basic physical needs as well as our resources permit. We are as patient and kind as we are able to be, given the shortage of personnel and the pressures of work. We try to help the families when they are in difficulty, but mostly, we dare not open the Pandora’s box of human fear and anguish. We are not encouraged to ask people what it really feels like to have cancer, to be dying. We are not taught to hold their hands when they are lonely or afraid, or to cradle them, sobbing in our arms, smoothing their hair, holding them until the storms of emotions pass. We are not trained to love. Or rather we are trained to suppress our love, to don a protective uniform especially for work, a uniform that keeps us at a safe distance from our patience so that our meetings are those of professional and client, not of the frail human beings that we all are. Could it be that we are unconsciously denying our patients the one thing that they long for, the one gift that it is in our power to give: our human warmth?
The dying are a people on a journey. They are an uprooted people, dispossessed, marginalized, traveling fearfully into the unknown. The conditions and speed of the journey may vary – sometimes the movement is barely perceptible, like moving floors at an airport, but sometimes the tracks hurtle through the night, throwing their bewildered occupants from side to side with all the terror of the line to Auschwitz. Above all, the dying are alone and they are afraid.
Paradoxically, these fears are rarely articulated, so strong is the cult of the stiff upper lip or the desire to protect those closest to them. What they want more than anything is that this thing should not be happening to them, that it should turn out to be a bad dream, that they should be rescued, cured, kissed better, made whole.
But since this cannot be, they want someone to comfort them, to hold their hand, to face the unknown with them, They need a companion, a friend.
Love, especially in the hospice context, can be a very practical and earthly business. I think especially of David, a bachelor in his late forties, a wonderful man, one of the poor of our successful, affluent society who has lost even the one possession that remained to him: his physical integrity. By the time he was referred to our service, the cancer in his mouth had recurred despite treatment and he had a painful malignant ulcer where his teeth should have been.
Through tears, David asked for a little watery porridge to eat. It is difficult to explain the love-hate relationships we have with these specters at the feast of life, gaunt figures with their tissues and their vomit bowls, oblivious to the appalling stench from their foul necrotic tumors. We are not immune to the smell of decaying flesh, and, like anyone, we long to escape to where the air is pure. And yet, cohabitation peacefully with our distaste, is a real love for these broken people.
People mutter of people like David, “How awful! If it were a dog, you’d have put it down.” But then, David is not a dog, but a man with cancer in his mouth, who is living out his last precarious days, loved and cherished in a way that he has never known before.
It is in this lavishing of love on patients like David that the hospice movement stands in a prophetic relationship with society at large, for it affirms the value of the brain-damaged, the mutilated and the old to a world which values the clever, the physically beautiful and the athletic.
It is about developing a degree of insight into the patients’ world—what the psychologists call empathy. It is about becoming sensitive to the pain of others and therefore becoming terribly vulnerable. The spirituality of those who care for the dying must be the spirituality of the companion, of the friend who walks alongside, helping, sharing and sometimes just sitting, empty-handed, when we would rather run away. It is a spirituality of presence, of being alongside, watchful, available; of being there.
Put like this, the care of the dying seems an impossibly daunting task. Who but a fool or a saint would deliberately expose themselves, day after day, to intolerable pain and sadness?
If death is in reality birth into new life, then the carer is one who attends the person in labor, comforting, encouraging, facilitating as new life emerges from the old. Watching people grow in spiritual stature is one of the most exciting aspects of working with the dying—as indeed it is in any ministry. Growth, however, is always the work of the Spirit – we cannot make it happen. We can only try to provide an environment in which it can occur, if it is meant to. And occur it does: people who seem quite ordinary gradually transcend their human bonds of fear and self-interest, until their only concern is for others. They become somehow translucent, incandescent, glowing like candles in the dark.
It is my experience that those involved in caring—whether it be for alcoholics, drug addicts, the handicapped, the poor or the otherwise dispossessed—are called to a particular experience of Christ and his kingdom.
They are called to share in his ministry of healing, of forgiveness, of the washing of feet, and in doing so they are caught up in the whole drama of redemptive suffering. This involvement can be like meeting a giant wave: it can catch you unawares so that you are bowled over and over, terrified, with your lungs full of water and mouth full of sand. Then after a while, if the ministry is right for you, you learn to cope with the sea. Sometimes you ride the waves, sometimes you duck just in time, diving blindly into the dark water—and sometimes your timing is wrong and you get knocked over again.
Then, just as you think, “I’ve had it,” you surface, amazed to find you are still alive.
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