April 14, 2005

Founding members of Sowelo are, from left, Jane Brown, Liz Porter, Liz Mersky and Maureen Dawn. The group offers care to local people who are facing death.

Caring for the dying in the village

By Lauren Heaton

We come into this world on an in breath, and we leave on an out breath, Yellow Springs resident Liz Porter believes. Harnessing the power of the breath is something Porter has used for many years to help her patients make the often scary transition from life into death. Since last year, Porter and village residents Jane Brown, Liz Mersky and Maureen Dawn have worked together to offer support for families in Yellow Springs who are faced with the possibility of dying or losing a loved one. They call themselves Sowelo, which is Celtic for transforming fear into hope and darkness into light.

In general, people in this society are not comfortable talking about death, the four women agreed. Fear of the unknown is pervasive, and it is very real, said Dawn, a nurse with Hospice of Dayton. People coming to the end of life want to know what is going to happen next and if they will feel pain, said Porter, also a hospice nurse. They fear the dehumanization of losing control in the sanitary, cold environment of a hospital or nursing home. And of course they fear the loss of everything that is familiar and knowable, she said.

“Fear of death is the big fear, and we’re apt to not want to deal with it because it’s just too big,” Dawn said. Then when the possibility of death becomes reality, many have a sense of emergency and panic and may end up using what little time is left in negative ways, said Brown, a hospice chaplain who teaches a course on dying at Antioch University McGregor.

In Dawn’s experience, approaching fear and exploring its roots can be an effective way to get control of the feeling instead of being controlled by it. “Sometimes it helps to face it, talk about it, experience it, own it,” she said. “Sometimes allowing the experience to be what it is, is enough.”

Sowelo’s purpose is to facilitate this process of discovery for families in Yellow Springs and help them see death as a natural element of life, Porter said. “We hope to give them more information and create a spaciousness so they can relax around it.”

Even Porter, who has helped hundreds of patients through what she calls “deathing,” the opposite of birthing, cannot grasp the concept of death. “The fear of death and loss is so huge we cannot wrap our minds around it,” she said. “We’re not capable of saying what it is.”

But they have seen how death can serve life, which gets to the core of Sowelo’s work. Within the profound experience that impending death provokes, there is a tremendous opportunity for healing and discovery for everyone involved in the process, said Mersky, an artist and hospice volunteer.

Sowelo has worked with six local patients since gaining nonprofit status last spring. The group received a $15,000 start-up grant from the Yellow Springs Community Foundation and an additional $4,500 in matching funds from individual donors in the community. The grant money is used to support the group’s mission to serve anyone in need, regardless of financial need. A free consultation visit serves to determine whether Sowelo can help, and there is a $60 charge for each subsequent visit, each of which can last from an hour to several hours.

Andrée Bognár, one of Sowelo’s five board members, thinks that every community could use a group whose services go beyond what is commonly expected of nursing care. “These four people are so dedicated and know the value of what they’re doing,” she said. “To them Sowelo is much more than a job.”

Through a deep ability to empathize, Brown, Dawn, Mersky and Porter have all gained a sense of the challenges people go through when they realize their time is short. Life gets distilled to the most important elements, the relationships that need to be resolved, the self-discoveries that need to be made and the affairs that need to be ordered, they said. It’s a painful, difficult and often messy process through which Sowelo hopes to serve as a guiding force to help navigate the way.

“There’s a transitional energy surrounding death and birth. It’s like a crack in the universe that opens the potential for healing, learning, forgiveness and gratitude,” Porter said. “Death breaks down the barriers and you come to a place where only one thing matters: love.”

All four women have experienced patients who cannot die because of the need to resolve some of these issues. But it’s the web of medical decisions, physical pain, fears about loss of control and other surface issues that crowds out the internal, personal work that sometimes has to be done before a person can let go, they said. People sometimes hang on because of unresolved issues, which if given a chance to heal, can lead to a profound experience of growth for the dying and their families.

Dr. Carl Hyde, who is one of Sowelo’s five board members, has seen the tension that can arise when the family is unwilling to let go of a patient who is ready to die. Sowelo could serve as an intermediary to listen, facilitate communication and offer calm advice on ways to untangle the complexities a death in the family generates, he said.

While hospice provides invaluable medical home health care and limited family support services, care providers are also overburdened with bureaucratic duties that take them away from serving all of a patient’s needs, Hyde said. He supports Sowelo because of its mission as a private group to devote time to developing deep and intimate relationships with patients.

“One of the things that provokes hospice is that the families won’t call until the patient is near death, and by the time the paperwork is done, the patient is dead,” he said.

Is there a right way to die? Sowelo members do not presume to tell their patients how to live or how to die. The group’s intention, they said, is to listen to concerns and present alternatives, provide companionship and serve as a resource for patients and families to use.

All of the women involved have expertise not only in end-of-life care, but in various types of supportive energy work. In addition to her job as a nurse, Porter, a writer and poet, is open to using the healing power of the written word to help clients transition and grow. Mersky also has skills as a videographer and photographer, which can help clients create memories or communicate difficult feelings. Brown teaches meditation techniques for diminishing pain, and Dawn practices Shamanic energy work, homeopathy and Healing Touch. Between them, they also offer reiki, massage and polarity therapy, and end-of-life care for families and their pets.

For Mersky, Sowelo’s work is about gratitude and the awareness of an awesome life force that being close to the dying brings to those still living, she said. Dawn feels that through Sowelo she is responding to an inner calling to challenge the universal approach to death and thereby expand our approach to life, she said.

“With hospice we’re expected to be experts on something, but I’m not, I’m human on a path of trying to understand life,” Dawn said. “Since we’re all connected with each other, and what we’re creating in life is a collective human story, how we live and how we die affects our humanness and our human potential.”

For Porter, working with the dying is a gift full of potential for profound discovery of life.

“It’s holding sacred space for people who are letting us into such vulnerable, tender moments,” she said. “I feel honored and humbled being in the presence of someone going through such a big mystery...it’s being in the presence of something joyous.”