The art of saying goodbye: Isabel Stenzel Byrnes at TEDxStanford

[Music] I was supposed to die when I was ten years old because that was the average lifespan of kids like me born with cystic fibrosis back in 1972 but I didn't die instead Ricky Sheryl and Sylvia three other kids with CF I met in the hospital died I was supposed to die when I was 19 when I had my first massive lung bleed and then near-death experience but I didn't instead two weeks earlier my best friend from cystic fibrosis summer camp Karen died I was supposed to die when I was 32 when my lungs finally stopped working and I went into respiratory failure but I didn't instead eighteen-year-old Xavier Cervantes became brain dead in a car accident and his family agreed to donate his organs his lungs came to me after a few days on a ventilator I woke up along the way I survived with the help of a cherished companion my identical twin sister Annabelle and I also had CF and received two double lung transplants together we were the power of two we traveled the world we wrote a book we became global advocates for organ donation and we inspired a documentary film but most of all we deeply loved each other I was supposed to die many times but I haven't but being left behind has been harder than all of my physical struggles combined and now I have outlived my best friend and soulmate my twin sister Anna sorry who died eight months ago from cancer last year Anna and I give a TED talk together and today I'm doing this alone but I do have the strength to stand in front of you today and talk about loss because I spent my entire life practicing the art of saying goodbye in the last 30 years that I've been involved in the cystic fibrosis community I have lost 102 three friends this is a screenshot from our documentary film the power of two with just a few of their faces these were beautiful vibrant people who taught me to be the best person I could be by loving and being loved and no matter what I've lost they've taught me that I've still been given much more than what has been taken away now I'm not telling you my story for any sympathy because loss is the price all of us have to pay for still being here now not all losses are difficult here I got to say goodbye to my lungs after my transplant I was able to thank them for 32 years of hard work and then say good riddance losing someone we love is the hardest experience that any of us will ever have to deal with it goes against our basic instinct that we're wired for attachment in a world where everyone is temporary thanks to help my transplant I've been able to get older and learn a few lessons about saying loss that I'd like to share with you today and by the way if you're not planning to lose anyone in your life these lessons won't apply my first lesson is clear that saying goodbye often evokes an emotional reaction that has the potential to paralyze many people maybe even some of you might react by saying nothing is going to happen or I don't want to think about it because that because the death of a loved one is way too hard to fathom for me I've had years of experience to practice and I finally realized that my emotional reaction is manageable emotions are like waves in an ocean they simply come and go and I am their observer I just go with the flow neither resisting or holding on to them now the good news is that all of us can become mindful of our feelings and to trust that we can be stronger than our sorrows my second less involves finding purpose in all of this losing fully experiencing my own pain made me more aware and compassionate of other people's pain so I became a bereavement social worker supporting those who have lost a loved one together with their experiences and mine I have been able to explore all of the choices we have in saying goodbye my third lesson is that there is no right or wrong way to say goodbye grief which is the set of normal reactions to loss is an art not a science grief is a uniquely expressed process now most people think of grief as curling up in a ball and crying our eyes out well grief is so much more than that it is a deeply intellectual process of making sense of what happened and also a spiritual process of finding meaning and purpose now my parents are German and Japanese so our culture's are stoic reflective and persevering yes we do shed tears were human but we also put one foot in front of the other and go through the motions of functioning many people do that my mother deals with her grief by cooking large amounts of food enough for an army my brother works on a series of home improvement projects making me wonder how many guys using power tools are actually grieving a loss my father hikes thousands of miles on the Pacific Crest Trail alone my grief looks like this me standing before you looking just fine on the outside but in turmoil in the inside my latest and greatest loss of my twin the most difficult I've ever faced my fourth lesson is that saying goodbye is much easier when we grieve collectively at our annual Cystic Fibrosis memorial we light a candle for our CF friends who've died and then we remember them this assures us survivors that when our time comes we won't be forgotten you see attachment extends way beyond the grain in the last three weeks of my sister's life she was home on hospice care every day she would lay on a cot outside under the Sun as and she would doze on and off but a stream of visitors were come by and share stories Anna was never alone thanks to hospice care this was as good of a goodbye as we could have asked for now my talk is called the art of saying goodbye when something or someone dies a burst of creativity is often born a few weeks after Anna died my artist friend Robin invited Anna's friends and all of our family to create these tibetan prayer flags each expressing their own unique farewell to Anna but together in this communal ritual creating something beautiful even friends from around the world many who couldn't come to Anna's funeral were able to feel connected to Anna one final time now in my 20s my artist friend Michelle invited me to participate in a Cystic Fibrosis photography project in this photograph and the accompanying poem I was able to express how I felt spending five hours a day on medical treatments see art has helped me not only say goodbye to my loved ones but also to my own health ability and beauty in the in my 30s when I became too sick to work my sister and I embarked on writing our twin memoir we wanted to document in the symbiotic bond and also to tell stories of our CF friends who had died by writing about them we could bring them back to life see writing enabled me to have a little bit of control over all of the uncontrollable pasts and help me reorganize and gain perspective of what I had been through today I lead with Arup utak writing groups for those who are grieving a loss well-intended people often tell us that we should move on let go or worse get over it but what that does is Islands us writing allows people who are grieving to have a voice and to find some power over their pain one of the members of my group Carell lost her only daughter and husband and wrote a powerful poem this is just a very brief excerpt Carell writes grief amplifies and intensifies it disrupts interrupts turns apple pie into dill pickles music into sirens another member of my group Christine after the death of her mother I wrote if you were to ask me what stage of grief I'm in I would say denial anger fear profound sadness sequentially and then all at once and sometimes not at all Christine expresses her quandary over the stage model of grief first expressed by Elisabeth kübler-ross after her many interviews with dying people not those who are grieving now the problem with the stage model besides the fact that they were never empirically tested is that they create an expectation that grief is a linear process and then it moves towards resolution when in fact grief is chaotic and a logic not linear and it follows no timetable Christine shows us that my final lesson is that grieving is about choosing what to hold on to and what to let go of in the past I spend a lot of energy trying to make sure I didn't forget my friends I brought a tape recorder to Cystic Fibrosis summer camp and I recorded conversations with my friends I still have those tape cassettes but no tape player I also made an annual scrapbook but over so many years now my bookshelves and closets are overflowing with memories by trying to hold on to the material stuff has made it more difficult for me to do the actual internal work of saying goodbye saying goodbye means finding a way to acknowledge that people come and go in our lives but they leave permanent imprints in our characters we inherit traits from everybody who crosses our paths and touches our hearts if you or your if you have ever lost a loved one or someday live long enough to be left behind I hope that you too will be able to 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 and if we can acknowledge that someday we might say goodbye to our loved ones we can cherish and love them deeper and remember them with gratitude more than with pain now it's almost time for me to say goodbye to you today but before I do I would like to share one more form of art with you for the last seven years I have been practicing music as a way to honor my lung donor Xavier with the bagpipes the world can still hear Xavier and so with art and storytelling Xavier and all of our loved ones can remain eternally present in absence so then perhaps we don't have to say goodbye after all thank you this is so much [Music] [Music] [Applause] you

Channel: TEDx Talks

Views: 96,464

Rating: 4.9143038 out of 5

Keywords: amazing grace, organ donation, ted, tedx talks, stanford, power of two, tedx, art of saying goodbye, innovate, tedx talk, collective grieving, ted talk, TEDx, cystic fibrosis, ted x, grief, bagpipes, twins, bereavement, ted talks, university, isabel stenzel byrnes

Id: Dkffpibi-Dc

Length: 13min 56sec (836 seconds)

Published: Fri May 23 2014