Ending It Well: Missives From Inside the Death Wellness Movement

Perhaps this may sound morose, but I tend to think about death more than the average person. I wouldn’t say I’m obsessed in an emotionally unhealthy way. I like to think I’m facing my fear. Aren’t most of us fearful of our eventual fate? Do we fear the great unknown, the suffering that may precede death, or just the concept of absolute nothingness?

As a teenager and young adult, I had my bouts of depression and entertained the idea of suicide, but thankfully the bouts were short-lived. I’ve evolved into a reasonably content adult.

Shortly after I turned 30, my mother died. She had battled lung and brain cancer for a year. Two months before she died, I visited her in Florida and perhaps due to the radiation treatments, she occasionally thought I was her sister. The night before she died, she told me on the phone that she was getting her life “in order.”

Our small family of three did not handle her sickness nor her death well. Apparently, the doctor told my father that she would die within a year of her diagnosis; he did not share this information with me nor my mother. It took me several years to adjust to my mother’s passing; the only consolation was a vivid dream I had the first night I returned to California after her funeral. My mother spoke to me and it was so palpable that I woke up with the tactile sensation of her hand upon my cheek.

Jump ahead six years and I’m diagnosed with a progressive neuromuscular disease, called myotonic dystrophy. My mother was diagnosed with this a couple of years before she died but no one told me it was hereditary. My symptoms at the time of diagnosis were mild and did not prevent me from living my professional and personal life with vigor.

Turning to textbooks and the wild and wooly internet taught me a few things about my rare disease. The most memorable was a chart listing age of onset for various symptoms and the expected life duration. I would die between the ages of 48-55 years old.

The good news is that I’m now 57.

What is the Death Wellness Movement?

My first exploration, of what is now referred to as the death wellness movement, was a Death Café. In 2011, a young man, Jon Underwood, in the UK was inspired to hold the first Death Café in his home’s basement. His goal was to continue the conversation about death in a neutral environment while drinking tea and eating cake. The Death Café experience has occurred in close to 6,000 locations throughout the world.

The Death Café I attended was at a local mortuary; tea and cake were served. Over 30 people attended, and most were in their 40s and 50s. The facilitated meeting included individual introductions. I was the only one to speak about my imminent death; the others were there to work through issues related to the sickness or death of a close family member. I attended at least once again but felt like an anomaly since no one was talking about their own mortality.

I earnestly turned to reading a variety of books about death. The more I read, the more I realized how vast the topic is. Perspectives from physicians, patients, and caregivers. Pragmatic issues such as planning one’s estate, healthcare directives, and burial and/or donation of remains. How to engage loved ones in conversations addressing both the pragmatic and emotional aspects of death.

As I approached my 50s, my condition progressed to the point that I could no longer work full time. I felt a tremendous sense of loss and wanted to face it head on. To my good fortune, I discovered a brochure for an upcoming weekend retreat called Loss & Transition. Nurses, counselors, and spiritual leaders provided a nurturing environment for a small group of adults experiencing loss whether it be due to poor health, death of a loved one, divorce, or loss of work. Their work is based on Elisabeth Kubler-Ross’ Externalization Process. The experience was critical for where I was with my acceptance and understanding of my mortality. (Read more on Kubler-Ross' work in our story “How Decluttering Can Help You Process Grief.”)

My next steps were pragmatic—creating a living trust, filling out advanced directives, and registering with a Biobank. A Biobank stores priceless tissue samples used for medical research. The process necessitates advanced planning, communication between hospitals, funeral homes, and the research institution, and the tissue extraction must happen within hours’ post mortem.

My pragmatism has its limits. At a local community center there is the annual Embracing the Journey: End of Life Resource Fair covering end-of-life issues such as funeral and burial options, the role of legacy before and after death, respite for caregivers, as well as planning for pets during a person’s transition. I learned a lot from the sessions and individual vendors. Aside from donating my brain to science, I’m still unsure about the most ecologically sound way to handle the rest of me. My mother was adamant about being buried above ground, in a mausoleum. All I know is that a memorial service is for the grieving so I’m leaving those decisions to my spouse.

Finding Ease

With most of my affairs in order, I am now able to live my life with a bit more ease. There is still that fear of what precedes death … the suffering. Physicians assure me there are drugs for that. With more palliative care teams and mindful hospice workers, the final stretch might not be wrought with fear and trepidation. ”There are death doulas and even bedside yoga practitioners. Molly Lannon Kenny, a yoga therapist, began offering bedside yoga in people’s hospital rooms and homes in 2001. Today she leads bedside yoga trainings for hospice workers, chaplains, clinicians as well as caregivers. Some of her clients have requested her presence at their transition. (Some people are using death doulas; for more on this see our story “So what's it really like to be a Death Midwife?")

The death wellness movement is evolving with more people intentionally having those conversations I wish I could have had with my parents. Dr. Shoshana Ungerleider, an internist and palliative care advocate, launched the annual EndWell Symposium in 2017. This day-long San Francisco event attracts speakers from diverse backgrounds with the mission to make the end of life a human-centered experience. In an interview for a future podcast episode with Dr. Ungerleider, she explained how she wanted to “create a place where people can reflect on their own mortality.”

Last year I attended the event and have already purchased my ticket for the next one in December. I’m delighted to be part of a movement where the once taboo topic is openly discussed. None of the speakers have spoken about the post-death experience so I’ll continue to live my life mindfully and intentionally just in case the next chapter is nothingness.