Kelly Jo Schmidt, 39, is consciously dying. Photography by Amber Procaccini.
Jean Madsen, a hospice nurse and death educator, sees our society moving toward a more conscious model for death. “Just like a birth plan, I see more and more people wanting to make decisions about how they want to die, who they want with them and how they want their body to be attended to after death,” Madsen said.
Beginning of a movement
The work of Elizabeth Kübler Ross and the Hospice Movement helped shed a new light on the importance of care in the end of life. Her work in the ’60s gave energy to the work of other women, including Buddhist Teachers Joan Halifax and Sharon Salzberg. “There have always been strong women in thanatology [the study of death and dying], women who call consciousness into the process, whatever that may mean, Madsen said.
The movement is taking hold locally. Madsen is a member of the Minnesota Threshold Network, a collective that gathers to discuss its work at the threshold between life and death. Home death care advocate Linda Bergh hosted an evening discussion that brought people from around the state together for conversation and connection. “We come from all walks of life, we are artists, hospice workers, bereavement coordinators, journalists, writers. Some of us come to the group with professional experience in death and dying, but many of us are drawn here because of our own life experiences,” Bergh said. The members are interested in green funerals, home death care, bereavement and using words and art to give voice to the stories of their loved ones.
That many of the members of the Minnesota Threshold Network are writers reflects the growing interest in preserving life stories and documenting experiences. Last year a class was offered by the Loft Literary Center on the writing of ethical wills and other classes have begun to appear in Community Education catalogs and Senior Programs. “For some people, walking through the steps of an ethical will can help them come to a place of letting go,” Madsen said. “To take time, in whatever way they can, to do some kind of inventory-a way of becoming aware of and reflecting on your own legacy.”
Storytelling can be a point of entry to a deeper conversation with loved ones. According to Madsen, “It can be a dynamic dialogue between the person who is dying and their god and the survivors. Ultimately death is a solo journey but we take into that experience everything that has led up to that moment.”
Like a birth plan, things don’t always go as planned. “It doesn’t mean they need to be happy, or fit a certain emotion. They know that this is where they are and that they are going to talk about it,” Madsen said.
In the conscious-dying movement, there are people who believe that death needs to be peaceful, but Madsen sees it differently. “We need to change our language around death. It is perceived as something everyone should achieve, this peaceful death, making there be a right way or a wrong way to do it. Like childbirth, you can’t have this picture of how it is going to be. It isn’t until you are there that you can know what the experience holds for you. Peaceful has to be redefined.”
Mary Treacy O’Keefe agrees. She is a spiritual director and co-founder of Well Within, a holistic wellness resource center located in West St. Paul. O’Keefe has walked with many people on their journey to the end of life. “We are real comfortable around here with death and it is not a failure. We ask ourselves, ‘How can we be more fully present in this process, because there is a lot of beauty and grace in it?'” Families are encouraged to be actively involved in the process. “When the family is not in a place of acceptance but the dying person is, the dying person is forced to use her energy to hide the truth … instead of walking toward their death with support and honesty,” O’Keefe explained. “The desire to stay in the truth of the experience is not just for the person who is dying, but for the people around her as well.
“I was working with a Latina woman at the end of her life and her friends came in and were singing Mexican songs to her. They are Catholic so they were praying the rosary out loud. It was so incredible. It was [so] peaceful that she just slipped away as these beautiful friends sang to her in her native language.”
Well Within focuses on supporting clients as they move through the process. “If you can minimize fear, you can minimize anxiety. That’s where the healing comes in,” O’Keefe said.
Not everyone who participates in Well Within’s Renewing Life program is actively dying. The classes are open to anyone with an interest in well-being. “The program can be life changing,” O’Keefe said. “We talk about ‘live, live, live and one day you die.’ Being mindful of everything that is going on. Even the pain. Even the suffering.”
Every story of conscious dying is different. Madsen said, “Some people seem to resist to the last breath. [Dying] is as varied as … childbirth. If you don’t follow the birth plan it isn’t less of a success. It’s just different. It is the same with death. To be conscious is to participate in the dialogue, whatever that may be.”
Kelly Jo’s story
Kelly Jo Schmidt was diagnosed with Cystic Fibrosis (CF) at the age of 18 months. At the time of her diagnosis, the average life expectancy of a person with CF was 9 years. Today it is 38 years. Schmidt is 39 and considers herself to be both actively living and consciously dying.
As she speaks, her breath is shallow and her voice is raspy. The energy of her spirit shines through her bright eyes and she seems full of life, even with her limited energy. “I’m not afraid to die. I’m at peace with it,” Schnidt said. “When I think about dying I have an inner peace … because I have such a connection with the god of my understanding. I’m going to be dancing in a field of sunflowers someday and that to me is exciting.”
She grabs a large syringe and effortlessly releases the contents into one of her two picc lines, a central line that is placed into a larger vein, which goes directly to the heart. This helps the medicine get closer to the heart, allowing medications to get into the system more efficiently. She gives herself two to three kinds of liquid medications seven times a day. “That alone makes me tired. Even though they are good and have a purpose they steal my energy,” Schmidt said.
Schmidt continues to volunteer, despite her limited energy, with women at the county workhouse. “That’s where I see God the most, in other people. Especially my girls at the jail,” Schmidt said. She is also working towards her dream of opening a home for women in recovery. “I want to leave a legacy. I want to be known not just as a women who had Cystic Fibrosis, but as a woman who changed the world in her own way,” she said.
“I ask myself, ‘Do I want to die graciously or do I want to die resentfully’? That’s not a hard choice anymore. I can be angry and hate this disease, ’cause I do, because it steals time and energy and joy sometimes, but I can’t hang on to that because I don’t want to give my strength or my energy over to that,” Schmidt said.
She is realistic about her physical life. “If I catch another pneumonia, that could be it. [CF] is such an invisible disease. It is definitely … invasive … insidious.” She describes what it takes for her to maintain her life. “Get up. Coughing. Kind of like a sputtering old car. You get up and you do all your inhalers. You take 40-plus pills. I do a vest machine that does my therapy for me. I do that four times a day. I also have a guy who comes at 2 p.m. every day to do my palming [percussive motions performed to release secretions in the lungs].”
For Schmidt, the future beyond death is a bright one. “When I die I am going to have a brand new glorious life where I can breathe. Just taking in a full breath will be amazing. It seems unfathomable right now. A full breath? But when I think about it I can feel it. That’s what I imagine.”
Like many people who are consciously dying, Schmidt has planned her own funeral, complete with songs, readings and dancers. “I’m going to have a celebration.” The conversation about death is one she has often, both with her husband, Mark, and her family. “We don’t like to go there, but there are times that you need to talk about those things. To be leaving the people I love behind, that’s what hurts the most,” she said. She also fears leaving things undone.
So she continues to work toward her dreams. Her commitment to the women’s recovery center is strong, but she knows she needs to set limits. “It is letting go of your ability and your capability and realizing that this disease has a hold on me. That’s been the hardest thing this year, to admit that it has a hold on me. I don’t have control over this anymore. I can’t fix it. I can’t cure it.” And she continues to moves forward into creating her legacy.
My mother’s story
MWP feature writer Jeanne Bain shares her personal experience with “conscious dying.”
When my mother, Viv Bain, was diagnosed with cancer in December of 2000, we knew what the future held. The only proven treatments for her type of cancer were coffee enemas, which she refused. She was offered palliative chemotherapy, which helped the symptoms, but made no promises to prolong her life.
She had no control over her diagnosis, but I stood in awe as she embraced the dying process and the way she chose to live the remainder of her days. She could try to fight a cancer that couldn’t be fought, or she could choose to awaken to her fate, and walk the path with consciousness. She could pray for a miracle, hold good thoughts and believe that she could beat this. She did all of those things, and still, she knew that, “God had a plan for my life,” and she stepped consciously into that plan, whatever it held.
A few weeks after her diagnosis, she got her papers in order, including her finances. She planned her funeral, complete with songs and musicians of her choosing. She began to record memories and stories that could be passed down to the grandkids about her life, her life with our dad and her wishes for us. She was, in essence, making her ethical will, though she didn’t name it as such.
My mother didn’t have a name for what she was doing. She knew that there were stories she had inside her that she wasn’t willing to die with. So, she began to tell them. Some days she told little ones; some days she told long ones. On her difficult days, with weariness in her bones and breath being blocked by lung metastasis, she simply said, “not today.” I savored those days that she had energy though. I knew that when the cancer took hold and the active dying began, the stories would be all we had left to hold.
What is an ethical will?
The ethical will is part of Jewish tradition. It is a process that has existed through storytelling in many different cultures. Sometimes written, sometimes recorded, often oral, it is the life review, or the emotional counterpart to the legal will. The self-designed topics of an ethical will create a rite of passage to help a dying or aging person move forward.
For more information go to www.ethicalwill.com.
Conscious dying resources
Local resources offering programs for people with health crises include:
3115 Hennepin Ave.
Minneapolis, MN 55408
1880 Livingston Ave., Suite 103
West St. Paul, MN 55118
In the beginning…
Hospice pioneer Elizabeth Kübler-Ross’ website is full of information about her work with death.
Our culture treats birth as a joyous event. A woman who creates her birth plan has a myriad of options. She gets to choose who is present at the birth, and how and where she gives birth, creating a sacred, self-directed event. We’ve come a long way in choosing to honor that part of the circle of life. Those involved in the conscious dying movement think we ought to treat death the same way.