Should We Stop Telling People to "Fight" Cancer? The Problem with Warrior Language

When Senator John McCain revealed that he has brain cancer, well-wishers including President Obama and Vice President Pence, with the best of intentions, tweeted encouraging thoughts about McCain's strength and fighting spirit.  Steven Petrow writes in the Washington Post that this inadvertently makes the patient feel responsible for the disease and the outcome.

Warrior or people-pleaser, these character-driven approaches suggest that you are responsible for your outcome. Both are just wrong. 

“There’s been pushback against the idea that this warrior mentality is necessary for a successful outcome,” Rohan Ramakrishna, a neurosurgeon at Weill Cornell Medicine in New York who specializes in brain tumors, told me in a phone interview. 

Putting it bluntly, Ramakrishna said, “Your response to treatment is a biological one, not a psychological one.”
... 

People use warrior metaphors with good intentions, Ramakrishna explained, but the unfortunate flip side is the implication that it’s your own fault if the cancer comes back, or if you die. Those who triumph over more-curable diseases, such as cancers that have effective treatments, aren’t tougher than those facing glioblastoma — it’s just that the odds are more in their favor.

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

"We deserve to die in peace, Father Tom Welk says. He’s the chaplain at Harry Hynes Memorial Hospice in Wichita. You could say he counsels the dying. He says he counsels the living. We should talk about death more, he says. We should help each other die in peace....So hospice care is not only about giving comfort. It’s about giving purpose."

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

The Death Goes Digital Podcast — Death Goes Digital

Listen to the Death Goes Digital podcast, with episodes about "digital legacies"and online obituaries.

The Death Goes Digital Podcast — Death Goes Digital:

Teens learning life lessons in palliative care | CTV Montreal News

A Canadian program for teens who want to go into medicine has them working in palliative care:

"It's not because people are at the end of life that they don't want to talk about everyday things. Everyone is still mad at the Habs or whatever. They're still people, they still know what's going on," she said. Among those lively patients is Flo. The 92-year-old spent Thursday chatting with the students about her life, raising her family, and her job working at the Lachute Watchman newspaper. "They've got a lot to learn but we can also learn from them. It can work both ways," said Flo. Amy Schecter said after just four days, she is learning quite a bit from the patients at the centre, especially "to really enjoy life. As cliché as it may sound life is super important. Live it, have fun with it, and do your best."

Teens learning life lessons in palliative care | CTV Montreal News

Widower's Grief: Cantus: the Silence of Grief

"There is a great deal of silence in our lives now. Silence at home when we are cooking. Silence in the places they used to sit. Silence where we are used to hearing their voices talking about the inconsequentials of the day. We hear echoes of their laughter in the silence. In Cantus, and in grief, we are waiting in the silence for something to happen. And we are not waiting, because something is happening. We are listening. In the space between what we’ve known and what is not yet here, we are listening for the unknown. We are listening to the silence of grief, and the tension is exquisite, like salt and lime on the lips before the tequila."

Widower's Grief: Cantus: the Silence of Grief

When a Child Dies

Why I locked my father away - Salon.com

I felt like a new parent of a very large adult toddler; I had to watch him constantly. I wanted nothing more than to keep him with me but I was rapidly realizing that I couldn’t handle him. I’d go shopping and come home to a house full of gas — Dad had tried to cook but was used to an electric stove. The week before he walked my dog, as he had for years, and turned an around the block spin into a multi-hour silver alert ordeal. Fire and police finally found them both dehydrated four miles away....Of the top 10 diseases afflicting Americans today, nine are declining. Only one is spiking: dementia. Dementia alone will break the backs of Medicare and Medicaid — it’s projected to account for more than 70 percent of all costs by 2028. Homes don’t have to be like the sadder places I visited, residents acting like drooling zombies parked in front of televisions. As the need for care spikes, America needs to find non-pharmacological ways to improve the lives of those living with Alzheimer’s and dementia, and the jobs of those caring for them. Currently, more than 95 percent of research goes into drugs. No attention is being paid to care.

MemoryWell uses the power of storytelling and media to improve dementia and Alzheimer's care. Now we want to bring that to everyone.

Why I locked my father away - Salon.com

The Gentler Symptoms of Dying - NYTimes.com

The human body’s most compassionate gift is the interdependence of its parts. As organs in the torso fail, the brain likewise shuts down. With the exception of the minority of people who suffer sudden death, the vast majority of us experience a slumberous slippage from life. We may be able to sense people at the bedside on a spiritual level, but we are not fully awake in the moments, and often hours, before we die.  

Every major organ in the body — heart, lungs, liver, kidneys — has the capacity to shut off the brain. It’s a biological veto system. When the heart stops pumping, blood pressure drops throughout the body. Like electricity on a city block, service goes out everywhere, including the brain. When the liver or kidneys fail, toxic electrolytes and metabolites build up in the body and cloud awareness. Failing lungs decrease oxygen and increase carbon dioxide in the blood, both of which slow cognitive function.  

The mysterious exception is “terminal lucidity,” a term coined by the biologist Michael Nahm in 2009 to describe the brief state of clarity and energy that sometimes precedes death. Alexander Batthyány, another contemporary expert on dying, calls it “the light before the end of the tunnel.”

The Gentler Symptoms of Dying - NYTimes.com

Healthy retired nurse ends her life because old age 'is awful' - Telegraph

"A leading palliative care nurse with no serious health problems has ended her life at a Swiss suicide clinic because she did not want to end up as a “hobbling old lady”. Gill Pharaoh, 75, who wrote two books giving advice on how to care for the elderly, was not suffering from a terminal disease. She said she had seen enough of old age to know that she was “going over the hill” and wanted to take action to end her life while she was able to do so."

Healthy retired nurse ends her life because old age 'is awful' - Telegraph

A Widow Responds to Those Who Say it is "Too Soon" to Marry Again

Patton Oswalt, who has been very frank about his devastating grief since the death of his wife, has announced that he is remarrying.  In case anyone has a question, the only correct response to this news is: "How wonderful!  I wish them the best."  But, this being the internet, some idiots believe they have the right to express the opinion that it is "too soon."

I love this response from a widow whose husband died suddenly the same week Oswalt's wife died and who, like him, has shared her experience online:

You don’t get to comment on the choices of a widower while you sit happily next to your own living spouse. You didn’t have to stand and watch your mundane morning turn into your absolute worst nightmare. You didn’t have to face the agony of despair and the only person who could possibly bring you comfort had been ripped from your life forever. You didn’t have to stand in the ashes of what was once your life, when the sun itself darkened and the very air you breathed felt toxic in your lungs. Go back to scrolling Facebook and keep your ignorance to yourself. 

Who gave you the position to judge when it’s “too soon” for a person who has suffered the worst to be able to find happiness and companionship again? It's been 15 months! How long should a widow sit in isolation before YOU are comfortable enough to release them from their solitary confinement? Because it’s really about you isn’t it? You aren’t actually concerned about the heart of the person who has found the strength and courage to love once more. You’re worried about your own offended sensibilities rooted in old Victorian traditions. Stop pretending you are actually concerned about their “healing.” 

...The person who comes after cannot and will not replace the one we lost. To imply that is insulting to the widow, it’s insulting to the new love and it’s insulting to the love who was lost. Earlier I said that I was happy to see Patton Oswalt’s heart had expanded. I used that word intentionally. I say expanded because that's what widowed hearts do. They expand. One love isn’t moved out to make room for someone new. An addition is built. Just like my love for my daughter was not diminished by the birth of my son, so too, the love widows can have for someone new does not diminish the love of the one lost. The expansion of the heart is part of the grieving process.

CONFESSIONS OF A FUNERAL DIRECTOR » Let’s Stop Throwing the Dead Out with the Trash

Civilians can learn a lot from the military about saying goodbye with dignity and meaning.

"Finding ways to embrace our dead, instead of hiding them, is all a part of death positivity.  We don’t need to fear our dead.  We don’t need to hide them.  We don’t need to be ashamed of them.  Instead, we need to welcome the dead into our lives and allow them spaces among the living.  However that looks at a hospital, I don’t know.  But I do know that sending the dead out the same door as the trash isn’t it."

CONFESSIONS OF A FUNERAL DIRECTOR » Let’s Stop Throwing the Dead Out with the Trash

The Most Creative People Are Also the Least Afraid of Death -- Science of Us

If you feel your purpose in life is to make something that will outlive you, it doesn’t matter as much that your body’s only temporary; indirectly, some part of you will still be sticking around. “The current findings support the notion that creative achievement may be an avenue for symbolic immortality, particularly among individuals who value creativity,” the researchers wrote. We’re all going to die one day, a fact that’s easier to swallow if you plan on leaving something behind.

The Most Creative People Are Also the Least Afraid of Death -- Science of Us

When your dearly departed loved one was a bit of a devil | The Fresno Bee

"Can everyone be called a “loved one” or “beloved?” When people die, wounds we never imagined can rend our hearts. Eventually, with time and tending to our grief, most will cherish their memories like family heirlooms. Indeed, those accumulated memories from a lifetime likely become far more valuable than any inherited object in a living room. Nonetheless, some recollections and relationships are tainted. How about the verbally abusive parent or the always-angry grandparent? Or the children who lied to siblings, deceived parents and wrecked everyone’s life as they ruined their own lives?

...I would always hope that this widow or widower can live the remainder of their lives creating the treasure of good memories about a flawed person, rather than hoarding a storehouse of repressed hurt. Most aren’t saints; most are just human. Please, please, allow all of the honest feelings to come out as you grieve."


When your dearly departed loved one was a bit of a devil | The Fresno Bee

Creating the New American Buddhist Funeral - Tricycle

Amy Cunningham is a spiritual hero.  This interview is filled with wisdom.

We’ve allowed death and the whole dying process to become a medical event. In our communal sadness, we’ve become very insecure in hospital settings and often forget to think of our own wishes and demands, letting ourselves be buffeted about by hospital policies or funeral home pronouncements. Before we’re even cognizant of it, we find ourselves moving mindlessly along the conveyer belt that is the $14 billion funeral and death care industry.

Funeral planning can be its own spiritual practice. There’s a worksheet I hand out during my workshops on new possibilities in end-of-life rituals that involves jotting down “kitchen sink” wisdom. What do you believe with all your heart? What has your life taught you thus far? What matters most? What is your credo? We cover everything from the practical (tips on running a household, finances, fixing stuff) to the personal (relationships, personal integrity, politics) and the spiritual (musings on what life’s all about, God, goodness, meaning-making).

Creating the New American Buddhist Funeral - Tricycle