End Well 2018 Inspired Curiosity, Challenged us to Share Our Stories

2018 ePatients and eCaregivers share their experience at our End Well Symposium.

In 2018, we had the privilege of sharing the stories of our ePatients and eCaregivers — those who have experienced first-hand serious illness and caregiving and whose lives have been shaped by confronting the uncomfortable. We were grateful to have this group in attendance at End Well 2018 and, below, they share their favorite moments from the symposium and the inspiration they drew about their ability to transform the conversations we have about the end-of-life experience.

Jeremy Pivor, ePatient

This is an excerpt of Jeremy’s End Well reflection. You can read his entire reflection on his personal blog, Jeremy’s Journey.

The End Well Symposium felt like a home away from home. Just one day after receiving an immunotherapy infusion for my experimental cancer treatment, it was a space where I could be part of a community that understands a simple truth: talking about what it means to end well helps us all to live well. And thinking about what it means for each of us to end well reveals our true values. Imagine the possibilities for human connection if we all took the time to sit down and have these conversations?

Jeremy pictured with End Well founder Shoshana Ungerleider

Hopefully this event is the start of a much larger culture change. One that is inclusive, that as Alicia Garza pointed out, recognizes the intersectionality with so many other equity and justice movements. The first step towards change is bringing End Well’s energy beyond the walls of the Symposium.

I think Jeremie Saunders of sickboypodcast said it best: 1) It pays to be vulnerable. 2) Life is too short for small talk. 3) Everyone has an incredible story to share. I will continue to share my story for however long I can, and I can’t wait to listen to the experiences of others.

Learn more about how living with cancer has shaped Jeremy’s understanding of what it truly means to live and die well here.

Maggie Rogers, ePatient

What an odd concept to feel at a home in a room full of people talking about dying. Throughout the day, I laughed more than I ever thought I would, I cried just as I expected to, I was awed by necro-tech, I heard sound with my entire body, and I connected with complete strangers.

So much about ending well is about living well — we all have personal stories that are worthy of being heard and we shouldn’t wait to share them.

I left End Well feeling inspired and more empowered than ever to impact and reshape our health care system, starting with sharing my own story.

Learn more about the complications Maggie has faced as a result of being a childhood cancer survivor here.

Megan Mooney, eCaregiver

Megan [left], pictured here with fellow ePatients Molly Marco and Maggie Rogers

End Well 2018 was an enlightening, insightful and overall an amazing experience for me. I think that this symposium is a must for anyone interested in improving the dying, caregiving, grieving, hospice, palliative care, health care or living experience. As a former family caregiver and a committed advocate, I am very appreciative that End Well acknowledged family caregivers by bringing in several speakers who gave a voice to this topic.

I enjoyed every single speaker and took something from each of them. My favorite speaker was Jessica Hanson. She spoke so bravely and honestly about her son’s death. Her story was powerful, and she provided a well-instructed intervention for health care workers when working with families of a dying patient (invite, saturate, empower, prepare and heal). My favorite quote from the symposium come from Dr. Bon Ku, who said, “In order to live well, we have to plan how to end well.”

Learn more about Megan’s caregiving experience and passion for end-of-life education here.

Leilani Graham, ePatient

Is it possible to laugh more than cry during a day focused on the central theme of death and dying? End Well 2018 certainly proved that it is, showcasing speakers whose expertise ranged from sound healers to palliative care doctors, from trauma nurses to coroners, and from telenovela stars to podcast comedians. The beauty of a conference centered around the collective agreement of the inevitability of death suddenly makes the prospect of dying much less unfamiliar. We were challenged to alter our expectations of what it means to be the orchestrators of a good death. The audience was asked to think about their digital footprints which, unlike that of a foot on sand, will exist long after we are gone.

But what truly united the attendees and the presenters was not only a collective and genuine curiosity about the end of life, but also a strong desire to make a good death: either for ourselves, our patients, or for our loved ones.

Learn more about how Leilani’s heart transplant experience shaped her attitudes toward advance care planning here.

Aisha Adkins, eCaregiver

Aisha with sound therapist and End Well 2018 speaker Sara Auster

The End Well Symposium offered a truly delightful discussion on death. Speakers and attendees from diverse backgrounds and experiences brought to light the undeniable truth that binds us all: we all are born, we all live, and we all will die. These facts of humanity underscore the importance of fighting for the equal opportunity to experience complete quality life cycles, characterized by an abundance of empathy and an alleviation of unnecessary suffering. Change is possible at the intersections of our careers and identities. End Well is a phenomenal platform to catalyze that change.

Learn more about Aisha’s caregiving experience and how her organization, Our Turn 2 Care, is empowering Millennial caregivers here.

Molly Marco, ePatient

The spirit of the End Well Symposium is beautifully summarized through this quote: “In the beauty of life lies the hard truth of its end. With this knowledge, we are inspired to explore and cultivate an informed landscape of compassion and presence of mind, of authenticity and equality, and of collective empowerment for all of us.”

You might think a symposium that talks about death and dying is dark and dour, but it was surprisingly uplifting, empowering, and positive. I felt less scared, less awkward…I got the impression that real talk is what we’re going to benefit most from, particularly for those of us with health conditions who confront these thoughts on a daily basis.

Sickboy podcast host Jeremie Saunders’s words really stuck with me. He has cystic fibrosis, and his podcast is breaking barriers by confronting tough topics. With humor and levity, they talk about sickness. I loved his attitude. It was very much about “making the most out of the time we have left” and that “the building blocks of happiness are relationships we foster.” I took that to mean being real. I also loved to his advice that we “communicate with meaning.”

I feel like I’m forever on repeat: let’s talk about these things. Let’s talk about our fear, anxiety, and surprise joys during a cancer treatment or diagnosis. Let’s talk about our fear of the dying process. Let’s talk about our wishes after death. Let’s talk about it all. Let’s make it awkward. Let’s embrace the awkward. Our discomfort is OK. Maybe that’s the only way to live our best life: When we know that death is definitely somewhere in the rearview mirror. For all of us. So let’s talk. And remember, “you are all going to die.”

Learn more about how Molly’s life has changed since her brain cancer diagnosis in 2016 here.

Let’s talk about it!

Please help us continue to normalize conversations surrounding the end-of-life experience by joining us at End Well 2019 happening December 5th in San Francisco. Discounted early bird tickets are on sale now for a limited time!

0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *