Showing posts with label Death. Show all posts
Showing posts with label Death. Show all posts

Friday, September 15, 2017

Death & Bereavement In The Digital Age - A Panel Discussion At Stanford #MedX 2017

It's panel eve at Stanford Medicine X 2017.

Over the years, I've convened a few panels here, been a guest on many of them and spoken on the main stage. I've had many a powerfully moving informal conversation in the halls of Li Ka Shing Learning and Knowledge Center, and by the pool of the Palo Alto Sheraton (MedX's ad-hoc after-hours party).

With tomorrow's panel however, I jump straight into the deep end, and come full circle with one of the defining events of my childhood: the untimely death by suicide of my father when I was 4 years old in a family and a society that had perfected the "just get over it and move on" solution to grief and loss. After losing more people than I can count, I have had to unlearn everything that was drilled into me about Loss and figure out how to grapple and play with it in unfamiliar and ultimately much healthier ways. Social media and in particular, my experiences as a member of the #BCSM community on Twitter have been instrumental in helping me on this path.

Envisioning the panel and then working with Alexis Roberts Keiner, Liz Salmi, Michael Fratkin and Jim Rosenberg (who, sadly will not be at Stanford with us tomorrow) to shape it has already taken me on a spelunking expedition to the depths of my soul. Our collaboration sessions lit up those cavernous walls to reveal the most asphyxiating of pain juxtaposed with the most immense beauty. Our shared gallows humor, tears and tenderness got all of us through our preparatory sessions, and I am so proud and thrilled to see our work come alive and share it with the world tomorrow.

Thank you Alexis for being the catalyst, thank you Liz for being the connector, thank you Michael for being the accelerator, and thank you Jim for being the aggregator.


Added after the fact: the video of our panel.


Here is the abstract:

Death And Bereavement In The Digital Age


In 2016, people from around the world flocked to social media to mourn beloved celebrities, including David Bowie, Muhammad Ali, and Prince.

Meanwhile, for years and on a more intimate scale, individuals have been using (and continue to use) digital tools in creative ways as they experience serious illnesses, the end of life, loss, and bereavement:

-A baby dies suddenly and a mother informs her community on Facebook. In-person and online gathering, mourning, and healing ensue.

-A woman with advanced cancer tweets her illness and decline. Critics in national newspapers blast her actions, but her followers credit her with helping them.

-Cancer advocates die, and people who had only ever known them through Twitter gather online to mourn, celebrate their lives and … heal… and, manage their own heightened fears of dying and death—common emotions that accompany a cancer diagnosis.

-In the face of increasingly corporatized health care, a palliative care physician quits his job to better serve his rural community… he develops a way to help his patients, his colleagues, and himself more humanely tackle end of life issues through a combination of in-person and online video interactions/telemedicine...

-In the span of four months, a husband/father grapples with the progression from his wife’s sudden terminal diagnosis to her death. In the aftermath he develops a way—through a digital storytelling platform—to break down the taboos in talking about end of life and help people address the isolation, confusion, and stress that is such a painful part of the experience.

In this panel discussion, Liza Bernstein, Liz Salmi, Michael Fratkin M.D., Jim Rosenberg, and Alexis Keiner will explore the ways in which patients, caregivers, health care professionals, and anyone affected by loss are using and designing digital tools to address death and bereavement.

After each panel member introduces themselves and their personal connections to the topic, the conversation will focus on the impacts of our increasingly connected, digital lives on facing death, end of life and grief.

Questions we will address include:

-How has the digital age impacted death, dying and bereavement?
-What does the ubiquity of social media and digital tools add or subtract?
-How do online communities manage loss—and is it any different from managing loss “in real life” (IRL)?
-Are screens a way to distance ourselves from the realities of death, or can they help us cope? For example, by providing new ways to demystify and attenuate fears; to grieve, commemorate and commune; to create legacy and heal.

This carefully curated panel will bring humanity, dignity, kindness, and a healthy sense of humor to this sensitive but important topic.

Tuesday, September 6, 2016

All The People Who Died



I always forget that one grief is tied to all the others. That one loss revives all the others. That—at least for me—someone else's loss, someone else's pain can reactivate my own.


I experienced my first loss at age four. My father died. His name was Harry. When I was a little older I found out he had taken his own life.

Then three years later, my grandfather died. His name was also Harry. I called him Papa. His second heart attack killed him.

My mother and I moved back and forth through different countries, and the losses kept piling up: Loss of home, of family, of friends, of community, of schools, and even of landscapes.

My family—a dual lineage of stalwart survivors—handled loss with a combination of denial and a stiff upper lip, and therefore, so did I.

We didn't know any better.

More people died. My great-grandmother. I called her Gran Gran.

My three remaining grandparents. Bobba, Zaider, and Marzie.

And, they have kept on dying to this day. 

My two aunts. Beebee and Pam.

My Cousin Al.

And, more beloveds: Beloved friends, beloved colleagues, beloved mentors. Grant, Jody, and more.

And just a week ago, an 18-year old boy I had never met took his own life. His parents are friends of my dearest friend. Their kids were at school together, played together, grew up together. 

I have never met his parents. But my friend's grief, the boy's family's grief, the children's grief, the community's grief, the fact that like my father, the boy took his own life, all of that made a beeline for my heart and ripped it to shreds all over again.

It has taken decades, but over the past few years I have learned that the only way to handle grief is to face it, to name it, to let it live in you, to let it hijack you, to surrender to it. 

The practice does not come naturally to me. It explains why I am so surprised and resentful each time I am overcome with a sadness so acute and painful it stops me in my tracks.

I leave you with the song that says it all for me: Jim Carroll's "People Who Died." Everything about it, the raw, punk sound, the lyrics, the absurdity, it all speaks to me like nothing else.

I chose this version from YouTube as it showcases Carroll's lyrics. 






Friday, December 11, 2015

Scene Of The Cancer Crime, Or Adventures In Cancer PTSD

This happened this morning:


... and, from after the appointment:


I've had the same, wonderful oncologist since 1994, and I've had three separate cancer diagnoses. I've therefore spent an inordinate amount of time in her offices.

Her and her partners' large practice used to be in the medical tower adjacent to the hospital. I hated that office with a passion. Those hideous pink vinyl barcaloungers, aka chemo chairs, where I spent so many toxic hours. Plus the years and years and years of regular follow-up visits ("I'm watching you like a hawk because you were so young when you were first diagnosed," she'd always remind me), blood draws, false positives, difficult conversations, agonizing decisions... not to mention the super slow and crowded elevators.

And then, they moved! To a brand new building with much less worse interior design, lots of space, and most crucial for me, no traumatic history. All was sorta kinda ok for a while, even though the regular follow-up visits still brought up their putrid soup of anxiety, terror, anger, despair and other feelings that I had come to understand were "normal," post-traumatic-stress-style reactions to what had certainly been a series of traumatic events.

Then, my positive response to the new office changed with my second Cancer diagnosis... and a few years after that, my third. I now hate that place with a passion as well. I find it ironic that I am even saying this as I do not consider myself a "hater." Maybe there's a better word to use, but I am still so shaken from this morning's appointment that I am not going to even try and scrounge around my brain to find it.

I am still so shaken because I am shocked at what I consider to be the extreme level of my reaction. It is in no way shape or form proportionate to the reason for my appointment.

I realize though, that I have had a lot on my mind lately:

1. From the Paris Attacks to the Colorado Springs Planned Parenthood shooting, to the San Bernadino shooting (to mention just a few) to the rise in popularity of fascist-style, xenophobic bullies and haters (the man with the bad hair - I am not going to dignify him with his name; the extreme-right wing party in France - ditto for them), the end of 2015 is a dark, dark place and time.

2. Closer to home: the death of Breast Cancer Advocate Maria Fowler in and of itself, and then, selfishly, the fact that it has coincided with my new and impossible-to-kick persistent cough. I've been running scenarios in the middle of the night.:
Ok, if, God-Forbid, I have Mets (Metastases, aka, Metastatic Disease, aka, Stage IV Breast Cancer), what do I do? Who do I tell? I can't tell anyone this time. I can't tell my mother. It will crush her. Where will I go? How will I support myself? I am not ready to die. I have so much left to do and I am really only just getting started, only just beginning to get some good momentum. Gaaaaaaaah!
It's exhausting to then have to sit with myself and remind myself over and over and over again that:
This. Is. Just. Stuff. In. The. Ether.
These. Are. Just. Thoughts.
This. Is. Not. Reality.
I. DO. NOT. HAVE. METS. (Fingers crossed. As far as I know. I don't want to jinx this. Gaaaaaaaaaaaah again!).
BREATHE!!!!!

3. In three days I have to return to the office for the actual follow-up visit with my oncologist.


All of the above, plus the deep-down dread that has unfortunately become a permanent fixture of these follow-up appointments is likely responsible for this perfect storm of post-traumatic-stress misery.

And then I need to remind myself, again, that yes, again, my case is unusual. I have had Cancer three, yes, THREE times. If one diagnosis does something to a person—and, oh, yes it does—well then, the effect of three.... that math is beyond me.

And, I need to remind myself, yet again, to be kind to myself (why is it always so much easier/natural to be kind to others?), that, the sooner I allow these feelings to rise up and express themselves, the sooner, like a raging flash flood, they will pass.

All of this "I need to remind myself again" sounds like and feels like hard work, and, guess what.... it is. I don't like to think of myself as a complainer, but right here and right now, I am owning it. I am complaining, dammit.

*  *  * 


On the plus side, these responses to my two tweets warmed my heart and gave me much needed comfort:








Friday, March 8, 2013

Farewell, Beautiful Soul

The lengthy excerpt below from today's New Old Age blog in the New York Times speaks to what one of my dearest friends is experiencing right now.

Around three years ago, her dearest friend (I will call her Beautiful Soul for privacy reasons) was diagnosed with Stage IV Breast Cancer, and began Hospice Care at home at the end of 2012. Beautiful Soul left us two nights ago, and my dear friend is in the throes of that loss.

My friend and Beautiful Soul created a very special world in preparation for Beautiful Soul's passing, and I know for sure that as this blogger says below, there was "a sense of ceremony and intimacy, suffused with honor" when it happened.

View of the Pacific at La Piedra
At La Piedra, by Liza Bernstein
I hope my dear friend, somewhere down the line, after the tsunami of extreme grief has ebbed, flowed, and receded again, will find that sense of peace and acceptance, despite the unbearable pain of loss.

Knowing her, she will. But at what cost?

Again, Advanced Breast Cancer, Metastatic Breast Cancer, Stage IV Breast Cancer -- there is no cure, it is the cancer that kills and takes our loved ones from us. It takes them young, it takes them old. It doesn't discriminate. And yes, we may experience and learn important life lessons and wisdom and growth and so forth when we are there with them side by side.... but I'm feeling selfish. I don't want any more of these life lessons, I am enraged that my dear friend (and all others like her) has to experience this unspeakable suffering of the heart and soul.

I send her and all like her my deepest love and comfort.

May Beautiful Soul rest in peace.


Here's the excerpt:

After Caregiving, Comfort in Having Helped
By JUDITH GRAHAM
On the day of her death, Mom’s grandchildren came in, one by one, to bid her farewell. My brother, sister and I held her hand. I had a sense of ceremony and intimacy, suffused with honor. The honor came from acknowledging Mom’s long, hard journey, and from facing things squarely, encountering what it means to be human, in extremity.
A year later, on the anniversary of her death, I stood on a bridge crossing the Chicago River and had an extraordinary sense of time both collapsing and stretching into infinity all at once. It was a warm, sunny day, the water gleamed bright below and I felt Mom with me, amid all the beauty. 
In the end, I was not left with the loss I had dreaded so much. What I felt was a sense of fullness, uncolored by fear. 
I tell you this because during years of struggle, this may not seem possible, this sense of knowing you stood your ground with love and honor, this deep acceptance of all you did and left undone. But it is, and knowing this is one of the insights that followed my years of caregiving, which informs all the work I do here.