"I was supposed to die many times, but I haven't.”
A group of Stanford students were feeling every word Isa said, sensing how she who has closely confronted the reality of death since childhood finds meaning and fulfillment in life. They are particularly open to learning from this perspective, aware more than they ever imagined of the fragility of human life as they are surrounded by the harsh reality of death in the global pandemic. As their teacher, I want to bring in elders who can share their wisdom of how to live in the face of death.
Isabel Stenzel Byrnes is a young elder who was supposed to die many times because she has cystic fibrosis, a fatal lung disease. But she hasn't died and has survived to the age of 49 with the help of a double lung transplant. She was left behind by her twin sister Ana who also survived cystic fibrosis and two double lung transplants before succumbing to colon cancer in September 2013. A few months earlier Ana and Isa had given a Tedx talk together, and after Ana’s passing, Isa gave another talk, this time alone. Those of us who knew the twins as "the power of two," marveled at her ability to share her story, but she explained:
"I have the strength to stand before you and talk about loss because I spent my entire life practicing the art of saying goodbye."
Isa is a master of loss. She has lost countless friends to cystic fibrosis and credits them with teaching her to be the best person she could be through loving and being loved. But Isa also reminded us that losing someone we love is the hardest experience any of us will have to go through, because it goes against our basic instinct; we are wired for attachment in a world where everyone is temporary.
Isa offered the lessons she has learned through her own struggles, kidding those who might be in denial, "if you are not planning on losing any loved ones, these lessons don't apply to you."
Her first lesson is that we are more than our emotions and are capable of being mindful of our feelings, observing them likes the ocean's waves and not being paralyzed or overwhelmed by them; to go with the flow. “Trust that we can be stronger than our sorrows.”
The second lesson is that we can find purpose in all of this losing. Fully experiencing her own pain enables her to be more compassionate of others' pain. Isa personally finds purpose by working as a hospice social worker where wisdom she has gained from her life experiences provides peace of mind to those in terminal stages of dying. She also leads therapeutic writing groups for those grieving a loss.
Isa warns us that although we may wish it was clear and orderly, there is no right or wrong way to say goodbye, because dying is chaotic and illogic. She says that grief is an art, not a science and we make sense of what happened and find purpose in our own individual ways. She notes that her own Japanese and German cultures influence her to be stoic, reflective, and persevering, putting one foot in front of the other.
Isa's fourth lesson is that saying goodbye is much easier when we do it collectively, in healing rituals that assure survivors that when our time comes we won't be forgotten; attachment extends way beyond the grave. The tragedy of the pandemic is that it has robbed us of our traditional rituals of saying goodbye—we struggle to find meaningful ways of honoring the passing of loves ones within the present limitations.
This goes together with her final lesson, that art is healing, and when someone dies a burst of creativity is often born. I learned that art can help us say goodbye by making Tibetan prayer flags with Ana’s friends as a way of helping us to feel connected.
Isa credits art with helping her "to not only to say goodbye to my loved ones but also to my health, ability and beauty. In my thirties when I was too sick to work we wrote our memoir. We wanted to chronicle our symbiotic bond and tell stories of our friends who had died. By writing about them we could bring them back to life. Writing enabled me to have a little bit of control over all of the uncontrollable past and reorganize and gain perspective on what I had been through. Writing allows people who are grieving to have a voice and find some power over their pain."
Isa warns us that well intentioned people will silence us by telling us to "move on," "let go," or worse, "get over it." But the internal work of saying goodbye means finding a way to acknowledge that people come and go in our lives, leaving permanent imprints in our character; we inherit traits from everybody who crosses our paths or touches our hearts.
"Saying goodbye is learning what to hold onto and what to let go of. If you have ever lost a loved one or some day live long enough to be left behind I hope that you too will you find some grace in goodbyes. I firmly believe that by embracing our mortality with full awareness we can learn to experience life in a deeper and more passionate way. If we can acknowledge that someday we may say goodbye to our loved ones we can cherish and love them deeper and remember them with gratitude more than with pain."
Isa told the story from her days when she was a Stanford student and dating a young man who upon hearing the story of her life told her, "Oh, that's so sad." Isa made us laugh by exclaiming, "So I dumped him!" We thought we understood her feeling because Isa does not appear to be a person characterized by sadness. Certainly sadness is there as an emotion that comes from facing the harsh reality of loss, but like all of us, she is so much more than her illness. Her life is full of gratitude, connections, and pure joy.
As we shared our stories of loss we realized how much we have lost in this pandemic—death for some, all of us have lost big dreams and little everyday things that make our lives meaningful. In sharing we felt the comfort of human company, and renewed awareness of what we have gained by loving and losing. We felt richer, with our pain telling us how much we have loved. We left the class revitalized by Isa's vibrant energy that captivated us and inspired us to believe that saying goodbye is an art that we too can learn, as is living fully.
A student wrote in their journal: I feel surprisingly whole, energized, and reinvigorated. Having had death on my mind more in the past few hours than in most of my life combined, I feel as though I have gained important perspective on what it means to be alive. I feel a deeper sense of gratitude for those around me, as well as for my own health and vitality. Since there are no guarantees about how long we will live, and how long we will get to enjoy the wonder that is life, we might as well choose to live the highest quality life that we can.