The Gift of Dying Out Loud

INELDA training emphasizes the importance of being mindful that as end of life doulas we are simultaneously servants and students. Every dying person who invites us into their experience places us in the role of bearing witness to their journey. If we can suspend our judgements and beliefs, we can learn from each experience how to better serve another in their dying process—or even how to face our own dying. If we are fortunate enough to be in the presence of someone who feels a responsibility to articulate the experience of their dying, in a way that brings us deeply into that experience, it is an offering beyond compare. Our doula tribe was provided this opportunity by one of our own, Cari Leversee, when she called on us to work with her through her dying. Day in and day out she shared with us every aspect of her inner and outer journey with great openness and precision. In this way, she taught and served all of us as we attended her. Her dying was a true gift that all doulas can learn from.

A brief back story about this remarkable woman. Cari and her husband Richard moved to the San Luis Obispo, CA area in the spring of 2015. This was just three months after she had brain surgery to remove a large benign tumor located in the deepest part of her brain stem. Up to the time in 2012 when she was diagnosed, Cari had been an accomplished athlete in sports like canyoneering, rock climbing, snowboarding, and Olympic-class sailboat racing. She had refused surgical intervention for two and a half years because of the probable physical and cognitive impairment that would result. But in the fall of 2014 a new surgical option became available and she decided to take advantage of it. Unfortunately, even this improved surgical approach left Cari with physical and neurological difficulties that profoundly affected her daily life but didn’t hold her back from pursuing the things that mattered to her.

Cari’s chosen area of education was cartography (the study of mapmaking), which combines science, aesthetics and meticulous technique to communicate effectively special information about the nature of the world. She brought these same skills to a strong and vocal advocacy for individuals to understand their healthcare and after-death choices. She challenged the status quo of societal norms related to dying and death, at times loudly and always with deep, passionate conviction. She wanted people to make enlightened decisions that reflected new thinking about death and dying.

Cari was the first person to sign up for the INELDA training offered by Hospice of San Luis Obispo County in August 2015, in spite of the difficulties she faced after her surgery. She also became one of the first non-staff doulas to guide and support dying people as they explored the meaning of their life, created legacy projects, and planned for their last days. Cari worked tirelessly as a doula and on the causes she embraced. She continually brought new information about all aspects of dying to the attention of staff and the other doulas to enrich their knowledge and improve their service. She lived her life and worked as a doula from a place of seeing herself as dying, not as someone who would someday die.

In late 2016 Cari’s health started to decline. By August 2017, she started handing off some of the projects she had been working on but no longer had the energy to continue. She revised her Advanced Healthcare Directive (AHCD) and finally sought out a pulmonologist to diagnose her labored breathing and fluid retention. The test results confirmed what Cari had suspected: her lungs were filling with fluid due to metastatic cancer that also involved her breast. She opted not to have further tests for staging or specific identification of the cancer. “I know all I need to know to make my decisions”. She clearly explained: “I do not want to be cut (by surgery), burned (with radiation), or poisoned (by chemo). These are the only available options and I peacefully accept my imminent death.”

She began to engage more diligently in her death preparations. She sought the support of a medical hospice primarily for access to medication management, with the understanding that she and/or her husband Richard would decide about medications based on her AHCD. Despite her continued decline and a desire to seek a “peaceful calm,” Cari still engaged in the activities around her, often taking charge of them. She would comment: “I’m not dead yet.”

Then, in October, Cari began a process she called: “dying out loud.” Through Facebook she engaged a wide social network to announce she was on hospice and detail her experience. Some people, who hadn’t understood or approved of her decision to avoid brain surgery years earlier, reengaged with her through Facebook. Her dying out loud project became her living legacy and a living memorial. She was able to witness the impact she had on people, as well as the changes in their thinking about death dying. Friends and associates began sharing photos of her, their fond memories, and their gratitude. They acknowledged her strength, expressed their admiration for who she had become, and praised the things she had achieved. Cari was able to take in the many expressions of love and respect people offered her, which helped her arrive at the state of inner peace that was so important to her.

During her final months Cari—always an exemplar—continued to assert control over her care. Her ability and desire to articulate her intimate experience during her dying was profound. She had a keen sense of observation and a strong desire to serve as an inside reporter to the dying process. She also encouraged people to ask questions and comment on her dying out loud writings. “Don’t hold back,” she would say. She had difficulty laying down and was more comfortable sitting up at the kitchen table. While there, she was often on her computer writing. But Cari’s sharing also took a toll on her. So, her friends and the doulas sought a delicate balance between engaging with her and allowing her respite from the responsibility she felt to teach everyone about dying.

Each hour spent with Cari, required being fully present. She would appear to be sleeping while a book was being read and would suddenly ask a question about a detail in the last sentence or paragraph. When receiving a foot massage, she could sense when the provider was drifting and would call them on it. (At the end of this month I will have a conversation with Cari’s husband Richard in a members-only webinar about how touch and massage needs to be different with someone who is dying. We will also discuss Richard’s experience as a caregiver, how it felt to have doulas supporting him, and what he learned as a professional masseuse in providing massage and touch to Cari. You can read a brief description of this upcoming webinar at another place in this issue of our newsletter.) When moving her, she demanded vigilance to slow, gentle, and efficient movements that were mapped out before starting. She expected conversations that were authentic. When there was silence she wanted it deep and engaged.

Cari died on Sunday evening, November 19, 20017, in the presence of her husband Richard, mother Diane, and her brother Jeff. Here are some excerpts from the amazing legacy Cari left for all of us as individuals who will also die someday, and as doulas who will guide and support many others when they face that time in their lives:

“You asked me about my visualization and I told you I didn’t have the language for it. The only thing I could tell you was that it had sound. And even that I could not describe. I think what I’m experiencing in those moments that I ‘drop into my visualization’ is almost the complete and utter quieting of my mind. That’s why I have no language for it. There’s nothing going on there to talk about. I find this mind blowing. I have never experienced my mind in a quiet state. It’s stunning! And I’ve done lots of meditating, but I’ve never achieved a ‘quiet mind’ like all the meditation teachers/facilitators say to aim for. All it’s ever been for me is a changing of my thoughts.”

“I find it intriguing that I would be drawn to quiet in those moments that I withdraw from the world. That is not my idea of what we do when we are ‘drifting’ into a visualization. When we, as doulas, guide someone who is dying with a visualization, aren’t we just helping them to change their thoughts to (hopefully) something more pleasant? I think my mind is raising the bar on that intention. In the role of being my own doula, I think I’m guiding myself to something more pleasant alright. I’m guiding myself to a quiet mind.”

“I find it important to point out that I’m not losing consciousness during those moments. No, in fact, I’m super conscious in those moments. I’m totally aware of the quiet. It’s like I’m hyper-aware. And in those moments, I’m finding it totally refreshing not to be thinking. That’s the indulgence, the visualization, the aim – to have no thoughts. And in those moments when I’m not thinking, I’m fully drinking and breathing it in like it’s my new form of water and air. I’m actually gulping it in during those moments.”

“This brings up another amazing realization about what I’m experiencing as I’m dying. I can feel my body, my physicality, fading bit by bit. But, not my consciousness. I’m really becoming aware that they – consciousness and physicality – are separate things, entities, or whatever you want to call it. It is really mind blowing to observe or witness my body – my physicality – dying. That could not happen without consciousness staying intact and fully functional. I’m fully witnessing my dying. I marvel at all the dysfunction taking place – from my toes constantly curling to my ability to swallow disappearing. That’s what I think is happening to my breath. It’s not that my lungs are drowning in fluid. It’s my ability to breathe is fading away. It’s dying. I’m dying. Sometimes I think I’ve gone way past the point when most people would be dead. And it’s the mere act of me observing myself – intensely witnessing my process – that is keeping my physicality alive. Now there is true quantum physics in action – the real power of observation.”

“On a totally different topic – supplemental oxygen. CCH (Central Coast Hospice) delivered a supplemental oxygen machine on the day I signed up, September 22nd. Pretty funny that I turned it on for the first time September 30th. It’s amazing! No doubt I’ve totally extended my life. Last night I was really struggling for breath. In retrospect, I think I was close to death, although my blood oxygen was 90, so maybe not that close. Then I had an epiphany – the oxygen machine! Richard set it up, I put in the nose cannula and my blood oxygen shot up to 98 almost immediately. You and I have talked about how medicalized dying extends death. That definitely happens with the oxygen machine. I know I’ve been granted more days by that machine. And it’s a good thing I’ve been granted more days because I have more work to do. I have to arrange my full body deep sea burial. More observations……….weeeeeee!”

“As I am dying what I feel in my body is mostly stiff and uncomfortable. Some painful pangs, but mostly discomfort and I feel this is minimal compared to the emotional, social and psychic pain of dying – of leaving life behind. I see that kind of pain as intangible – almost ethereal and almost unbearable. And the sheer lack of physicality to that kind of pain allows it to easily get transposed onto/into physical pain – because we are such a tactile culture. If you cannot see it, feel it, measure it, quantify it in some way, it must not exist. So we want to attach it to something physical – to make it more real, more acceptable. The pain meds I am taking for my dying are not addressing that intangible pain. They are strictly working on physical symptoms. Perhaps if I took them until I became comatose they would block out the emotional, social, psychic pain. I realize now that I’m on the other side of this dying experience that the pain I thought I was witnessing in others is not what I thought it was.”

“I am finding myself wanting to go more inward, but not to the sound at all. It’s the quiet I am seeking. There is a peace in that quiet I find satiating. I don’t feel a ‘difficulty to return’ as much as a longing to go. Difficulty is dissolving in my life experience and surrender is expanding.”

“The human body is so incredibly amazing! Like Jill Bolte Taylor, who studied the brain with a passion and then got to study herself having a stroke. I have had the humble honor of studying myself dying. I have learned so much!  In so many ways – physiologically, emotionally, intellectually, socially, culturally, etc. I hope I have disseminated my experience to those interested. Don’t hold back on your questions.”

Cari displayed remarkable strength, openness, and love in “being fully present” in her dying. Her living legacy to be “Dying Out Loud” also afforded her the experience of being seen and loved by a great many people. She hoped that in her writings and talking openly about dying she would be leaving an impact on people she knew, strangers who she met on her journey, and those who would never meet her except through her writings afterwards. We are so fortunate to have had a chance to know Cari and will carry her teachings forward in both our work and in preparing for our own deaths.

In the next issue of INELDA’s newsletter we will continue Cari’s story by writing about how her after death journey unfolded. Cari had wanted a deep-sea burial. Before she suggested this, we didn’t know how to arrange that kind of funeral. Again, Cari brought us new information about death and dying. The final preparations for that burial didn’t turn out the way it was originally envisioned. And that too taught us a great lesson.

“My purpose: To help people live their dying.”
Cari Leversee, EOL Doula