My son’s time in utero was healthy and thrilling. Everything inside me was oriented towards a future where I would be his fearless mother, dedicated to loving him, and watching him grow into a mature and generous man. Four hours after his birth, I was forced to make the excruciating and unforeseen decision to take him off of life support due to complications from a ‘true knot’ in his umbilical cord. No one ever talked about this as a possibility; the prospect of death was never uttered by those supporting my pregnancy. The experience cracked my world wide open and gave me an immediate and embodied understanding of the fragility of life; a fragility that is the foundation of our existence as humans.
I’d always loved the timeless quote by Rilke, “Be ahead of all parting, as if it has already happened.” Suddenly, it spoke of an emotional and mortal maturity that I was sure I didn’t have, but was now being asked to cultivate. I floundered and drowned in the hollowed out years of my life after this loss. My grief was colored by anger and despair. It felt raw and abrasive and weighty. I’d wake up in the morning and be crushed over and over again by the realization that my life was not a dream. It was my life, and it hurt. I was caught off guard by my son’s death, because my culture does not talk about death. Eventually the experience began to situate within the interiors of my heart and I arrived at a place of tentative acceptance. My son had died, and here I was.
My loss taught me that birth and life and death all stand in intimate proximity to one another. Somehow, in direct defiance of what I wanted to be true, they followed on one another’s heels in rapid and disorienting ways. Babies die and older adults die and life circulates within waves of impermanence. Somehow, we are good at pretending this isn’t the case. I now work as an End of Life Doula and support families in talking about, planning for and experiencing death. Some birth doulas wish for the term ‘doula’ to be reserved for the birthing process only. We try so hard to separate life from death to feel stable and bold in our humanness.
Through my son’s short life and subsequent death, I now see I was given the opportunity to really reckon with the pains and joys of mortality. The experience served as a ‘quickened’ microcosm of learning for me. Even when we are given the opportunity to live 60, 70 or 80 years, death typically comes quicker than we expect. And we are often unprepared for the complexities of our own death, or the death of a beloved.
The loss of my son changed me and asked me to be in my life differently. As a community, we need to reimagine new structures and more courageous forms of showing up for one another. We need to embed in ourselves a greater “holistic literacy” – to be able to understand and talk about death and grief and the fragility of life. When we don’t talk about our mortality, or prepare for it, or hold the daily possibility of loss in our own two palms, we fail to see life as it is. From my own experience I know this creates more pain, more confusion and more disruption. The more we can talk about death in a candid manner, though, the more we can be moved by life. When we perceive and hold our own mortality close, we love harder and speak more truthfully.
Since my son’s death ten years ago, I’ve come to see that how we tend to end-of-life experiences, whether a life lasted a day or 80 years, is an indicator of so much. I’m convinced that a healthy community is one populated by death- and grief- literate people. My work as an End of Life Doula is about helping others to become reacquainted with their own mortality, as well as the surprising gifts that emerge when we allow ourselves to feel into these spaces. In light of my own loss, I’ve learned that to ‘be ahead of all parting’ is to know that things end, that nothing in life is guaranteed, and that to live is a risk unto itself. Life has a gossamer-like quality to it. To remember this is to live each day with humility and gratitude.
I do my best now to be intentional with my relationships. I work to stay ‘current’ with my regrets and to speak honestly about my love or frustrations with others. I meditate each morning in an effort to be present with ‘what is.’ I go to bed thinking about what I appreciated in my day: the abundant pear crop on my backyard tree, my parent’s health, a sweet conversation with an elderly neighbor. I wake up thankful that I have my breath, that I am filled up by the joys and pains of my life. I’ll never go as far as to say that I’m grateful for my son’s death. I’m just grateful to know that death lives in the very marrow of my existence. And this knowing is a precious thing, indeed.
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Elizabeth Johnson is the Executive Director and an End of Life Doula with The Peaceful Presence Project, a nonprofit that seeks to help Central Oregonians live well, age well and die well by reimagining the way the community talks about, plans for and experiences the last stage of life. https://thepeacefulpresenceproject.org/
Thank you Elizabeth for sharing an overwhelmingly painful experience with such grace, beauty, and honesty. The intertwined divine gifts of death and life spoke loudly to me as
I read and took in the thoughts expressed in your article.
Gratefully,
Mary Pittman
so beautiful….thank you.
Hello Elizabeth! My thoughts and Prayers are with you as you continue your Faith Journey. I am so impressed by the way you have progressed during this excruciating time and appreciate your generosity in sharing what you have Learned.
Peace, love and Prayers,
Claudia Callahan
You have put into words something I have felt so surely but have never known how to articulate. I am so sorry you lost your son, and so very grateful you have found such a beautiful way to live this life.
Elizabeth’s piece stunned me. Her utter honesty and openness about the devastation of her son’s death reminded me that there is no such thing as “closure” when such an experience takes place. For a while, it can take over your life completely, and you respond by allowing it to shut you down emotionally and spiritually. Or, you can simply respond, and live fully in every moment, denying nothing no matter how excruciating it might be. Elizabeth has chosen this way, and it has expanded her heart and opened her to all kinds of loving, creative and expansive emotions and experiences in work and, I’m certain, all her relationships.
Liz,
As a mom, its all so unimaginable! I thank you for your courage to share this with us…in all its fragile grief, in its cold bitter reality, in the aching heart where you will carry the love forever.
Kate
Dear Elizabeth – thank you for your gift of sharing your sorrow through words that made my heart clench and breath shorten. It’s clear you are fully present in your life and I concur that is the best way to live – through meditation, gratitude and touching others’ lives. I’m saddened by the loss of your little boy. All mothers have the hearts to grieve for another. With love, Kim