For anyone who's been plagued with autocorrect autocorrecting... which would be all of us. Do not click this in public unless the people around you also are clicking.
About the same time that Christopher Hitchens, who died yesterday at 62, started writing about his engagement with the esophogeal cancer that killed him, Jeff Stamps began his memoir, "A Dangerous Experiment." Jeff was dealing with a different kind of cancer, in his case, pancreatic, but both men used their encounters with mortality (and the medical-industrial complex) to plunge into their thinking. I don't know what else Hitchens wrote about his ordeal that hasn't been published but Jeff left behind a whole manuscript, his last entry written about seven weeks before he died.
When I saw that Hitchens had died, I remembered this long passage from Jeff's book in which he responds to Hitchens's essays and takes a somewhat different view of the metaphors surrounding cancer and terminal illness than the Vaniety Fair writer. Please comment if you are so moved. These two men, as Jeff points out early in his memoir, had the benefit of knowing that the end was in sight, which, he felt, gave him a certain blinding clarity about life. Herewith, an excerpt from "A Dangerous Experiment:"
Cancer War
An unusually healthy man, I wake up one day as a terminal cancer patient. I have earlier described my encounter with the diagnosis and prognosis, and my swift movement to acceptance, seeing reality as it is as well as I can. A realistic and ever-updated view of my bodily condition is the prerequisite for responding well to a terminal time fraught with challenges and possibilities.
My memory of the terminal diagnosis contains no sense of passivity or victimization. I never think my body has let me down, nor do I feel punished for bad behavior somewhere along the line. Most importantly, anger and fear do not arise to swamp every other feeling and thought. I am very sure that a physical state of anger will be unlikely to help my body contain my cancer, which I say out loud—and repeatedly.
What does raise my antipathy is the WAR ON CANCER in all its multitudinous martial manifestations. I’ve been pushed unwillingly into boot camp for newly-diagnosed patients with the most feared form of disease. Exhortations come in every media message:
“Battle your cancer.”
“Fight for your life.”
“Wage war on the aggressor cancer.”
“You can beat this.”
“Have hope.”
“Win.”
I’ve never liked the fighting-cancer metaphors, but that was an intellectual dislike. Now it’s a personal dislike bordering on conviction. A battle cry and charge against my cancer would actually be dangerous, I think. This conventional wisdom is profoundly counterproductive, particularly to those wearing the terminal watch.
Why is the fighting state of mind so destructive? Unless fighting is your business, the sudden arousal to battle brings anxiety and fear. When the “dukes up” moment is over, you’re still anxious and afraid because the threat of death remains real.
Without even knowing much of the biology, lay wisdom has it that fight/flight states are designed for emergencies, meant to be effective only for so long. After a point, they begin to demand more and more of the body’s diminishing resources. I see all those fight or flight chemicals and neural pathways, evolved over millions of years, as overwhelming my system just when I need every available bodily player alert and mobilized to respond to the emergency that some of my cells have gone haywire.
The will to survive is not the same as the urge to fight.
My body’s wisdom is much deeper than my consciousness, or even my most subtle unconsciousness, and I’m unlikely to lead an effective fantasy army against the imagined cancer from my level. While my mind may think there is an escape hatch to a larger consciousness and some post-death continuity, the Jeff-specific body knows this is it. Corporality is on the line. My job at 30,000 feet is to give the body all the tools and support I can to help it survive as long as possible. My job on the ground is to keep my body healthy and to live well.
Under the right circumstances, fight is the right response. As a default state, always fighting is ultimately fatal. You can never win.
The now forty-year-old War on Cancer, an Edward Kennedy-Richard Nixon strange-bedfellows concoction, is a poor enough metaphor to use for mobilizing society’s resources to rid humanity of a scourge. The phrase was coined during an actual protracted losing war (Vietnam) and when belief in progressive mechanistic science was at its zenith. Curing cancer was the next frontier to the just-concluded moon walk. We can do it, they said.
We are now fighting endless wars against endless foes, from the long-running War on Poverty to the gravely misunderstood War on Terror and its self-perpetuating state of fear. Meanwhile, very real wars are being fought all over the globe that are not likely to end with clear winners.
None of this fighting has gone very well, including the war on cancer. World War II was the last “Great War” with a decisive victory in classical terms. Even then, it took the horrific new-age atomic bomb to halt the war in the Pacific. Nuclear fear took hold. New fears have been added over the years. Few fears have been taken away.
In October 2010, a guest on Jon Stewart’s Daily Show, the insightful “news” program that manages to peek through the media murk, mentions a study purporting to show that attitude has no impact on cancer outcomes. This 2007 study and the many major media reports on it dominate searches around the subject of attitude and cancer therapy results. Not surprisingly, it draws fire from many in the field who passionately believe that optimism and a positive attitude lead to the winners who survive. For the more dispassionately scientific, the data just proves again that mind plays no role in the progression of an essentially biological process.
This University of Pennsylvania five-year research project studied 1000 patients with head and neck cancer receiving innovative radiation trials. According to the authors, its results showed that emotional state does not affect clinical outcome. Only one measurement was taken for the study, a single attitude data point constructed from six questions along the lines of “I feel sad;” “I feel nervous;” and “I worry about dying.” Not a strong case against the anecdotal evidence many offer of positive results through positive thinking. However, many anecdotes do not an assumption prove either. Science is weak on the effect of attitude on the course of disease, but rife with stories.
Missing from the 2007 optimist-pessimist attitude study are quality-of-life factors. Back in boot camp, the terminal patient hears early on about the life-quality/treatment-side-effect tradeoff. It’s like being read your rights before interrogation. Then you are moved right along to discussing treatment options and how to mitigate side effects. You grab whatever quality of life you can during the long campaign of many battles, or live depressed because you feel you have given up, or been given up on, when treatment stops.
It’s a little different if you’re short-term terminal [like me]. Medical science offers no cure, only some time. Therapies are palliative, not curative. The goal is “maximum time with maximum quality of life.” Great goal, but as in so many things, the catch is in the very logic of the mission since time and quality are so often a direct trade-off. Time in treatment is not quality time. Side effects rarely add to quality of life, although they can occasionally. So think positively, but don’t think there is a cure, short of a miracle.
But is pure positivity a good thing?
It seems that patients are generally classified as “optimistic” or “pessimistic,” sometimes placed on a slider scale between plus-minus poles. The optimists fight for survival; pessimists give up. In medical terms, optimistic patients opt for treatments that hold out the hope of survival, or more time. They aggressively pursue options even as first-line, second-line, and later treatments fail. The truly forceful fighters will seek alternatives like risky trials or go outside the medical system to pursue cures (one Stage III prostate cancer patient strongly recommended a raw food diet for me although I have to work to keep my weight up). Anything to beat death.
This classification exists on both sides of the medical divide, by doctors and providers and by patients and families. Culture plays a huge role in the language surrounding terminal disease and its likely progression, as we frame options in do-or-die sound bites.
Doctor and patient collude in the presumption that death is the enemy. Indeed, it’s the doctor’s mission: defeat death. Scientific American’s lead article in its 2010 theme issue—“The End. Or Is It?”—is “Cheating Death: How Far Science Can Go.” Portraying science as extending life by deceiving death is not a good message in a world rife with lies. Despite its provocative title, none of the articles even hints at a possible afterlife, even for believing patients. Oh, sorry, I almost forgot. There was one afterlife article—on the stages of bodily decomposition, “Dust to Dust: The brief, eventual afterlife of a human corpse.” Hardly a trip to heaven or nirvana.
Death is the enemy, so we marshal our forces to defeat it. This thinking largely bypasses questions of quality of life or what’s important to you, the dying patient, or how you might want to pass your final weeks, days, and minutes. These questions of course are eventually unavoidable, but typically occur to patients too late to change much about the quality of the terminal life, except, possibly, the small bit left.
Yet when we’re not at war with it, we know death is part of life, not some outside force or being. By externalizing it, robed now with cancer tumors, we detach the cancer and make it “other,” the enemy. This alien makes allies of doctor and patient as they link arms to defeat the common foe.
There is something I know about my tumors. This cancer is mine. It didn’t come from the outside, like a virus. Yes, many internal and external factors contributed to the cancer’s start and growth to the point of being a self-replicating part of my body. But these are my cells, and it doesn’t serve me well to alienate them unnecessarily.
I’m not a good story to tell of fighting the good fight. Or at least my story is told differently. To bring the fight against cancer and the workings of optimism into view I need to borrow someone else’s story. As I start on this part of the memoir, Jessica hands me the new issue of Vanity Fair. Timing is everything.
In the November 2010 issue, Christopher Hitchens, the famous English-American author, well-known and often-confrontational commentator, and passionate “new atheist,” has written his third commentary on being terminal. Online, I quickly find the first two.
I don’t mean to pick on this brave writer, but to offer a patient view other than my own with which to draw similarities and contrasts about terminality and treatments. This all-important patient view sits across from the even more important doctor view that ultimately drives the medical system, the subject of the next chapter.
Hitchens’s story, so briefly encapsulated in three short columns, illustrates the war metaphor and optimism in action, and adds a particular strain of scientifically-grounded anti-theism that reads like a religion. He is Everyman and woman because we all hold our cancer via some metaphor, experience it with an attitude, and have an orientation to the meaning and impact of death, even if it is dust to dust.
One June morning Hitchens, whose new best-seller, Hitch-22, had just come out, awakened to “feeling as if I were actually shackled to my own corpse. The whole cave of my chest and thorax seemed to have been hollowed out and then refilled with slow-drying cement.” This led to emergency procedures and a quick recommendation to go immediately to an oncologist. However, Hitch had other plans, including taping The Daily Show with Jon Stewart and then to an Upper East Side conversation with Salman Rushdie about his new book. He made it to both, vomiting backstage before each appearance. Then Hitchens looks at what he’s facing.
We hear about Hitch the terminal patient from him. He is a contributing editor at Vanity Fair, and in September he begins a series of commentaries about his first-person patient experience. “Topic of Cancer” is the initial installment, describing the events around his diagnosis. Each terminal, usually metastatic, cancer diagnosis is its own initiation, as unique as the initiate, and Hitchens is a great writer.
He speaks of “sick country,” of which he is suddenly an unwilling citizen, an egalitarian welcoming new land with its own language and where there is “almost no talk of sex.” In his “local Tumorville,” results developed over a week located the main tumor as cancer of the esophagus with metastases. “The alien had colonized a bit of my lung as well as quite a bit of my lymph node.” His 79-year-old father had died swiftly of this cancer; Hitch is 61.
Hitchens gives his take on the Kubler-Ross stages (as I have done upon diagnosis and its aftermath). Denial, he reports as brief, but he does have a “gnawing sense of waste.” “Rage would be beside the point,” he says, but bargaining might contain “a loophole.” Then he starts with the wager: the many personal costs associated with treatments against the vaguely promised probabilities of more life time. This points straight to “one of the most appealing clichés in our language…battling cancer.”
“You’ve heard it all right. People don’t have cancer; they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if you might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.”
He loves “the imagery of struggle.” So he struggles, but reports with a cold eye that it doesn’t feel like a noble soldier defending battle ramparts when they bring “a bag of poison and plug it into your arm. … You feel swamped with passivity and impotence; dissolving in powerlessness like a sugar lump in water.” He sums up with the resolve “to resist bodily as best I can, even if only passively, and to seek the most advanced advice.” His ending is chilling as he describes his disease as “the blind emotionless alien, cheered on by some who have long wished me ill.”
Hitchen’s October installment, “Unanswerable Prayers,” opens with a scientifically confused image of his cancer, quite clearly driven by his understandable distaste for what has happened to him.
“When I described the tumor in my esophagus as a ‘blind, emotionless alien,’ I suppose that even I couldn’t help awarding it some of the qualities of a living thing. This at least I know to be a mistake: an instance of the ‘pathetic fallacy’ (angry cloud, proud mountain, presumptuous little Beaujolais) by which we ascribe animate qualities to inanimate phenomena. To exist, a cancer needs a living organism, but it cannot ever become a living organism. Its whole malice—there I go again—lies in the fact that the 'best' it can do is to die with its host. Either that or its host will find the measures with which to extirpate and outlive it.”
Even as his most reasonable self in regard to the nature of the enemy, Hitchens describes action by an external agent, a fatal symbiotic parasite that consumes its host. Most surprising is his imputation of cancer as inanimate, like a rock, rather than a mass of living things operating at a simpler level, namely cells. Not just any cells, but his cells.
Hitchens, the renowned atheist, has not only externalized the bodily enemy cancer, but has transmuted it from living to non-living status. This is truly some sort of denial about the cancer reality, which requires using accurate, non-metaphorical language. Battling an outside, powerful, but “blind emotionless alien,” force distorts choices. Only in your mind is cancer an outsider.
However, Hitchens is after another enemy in his second commentary, all those wish him ill for his outspoken atheism. Actually, he is also after those kindly praying for him because they, too, are among all those deluded by religious explanations for everything based on Holy Scriptures of their fill-in-the-blank faith. After running through his basic arguments against the spiritually ensnared (one reckons for the umpteenth time), he wraps with a brash promise: “I shall continue to write polemics against religious delusions, at least until it’s hello darkness my old friend.”
His “old friend” is as close as he gets to the afterlife. It is a pithy summation of the dust-to-dust view—we just slip off into a good deep sleep, never to awake. A presumption, to be sure, but in any case the modern medical system is not well set up for just “slipping off.”
Still, like all of us deported to this foreign land that we did not seek, Hitchens is also preparing to die. Any patient can relate to his portrayal of “lawyers in the morning and doctors in the afternoon.” He describes the feeling we have of the “distinctly bizarre way of ‘living’… in a double frame of mind.” In our house, we call it “two normals.”
He expends great effort dismissing the value of prayer: “Praying for what?” he asks. He trots out a well-reported 2006 “Study of the Therapeutic Effects of Intercessory Prayer” that found no correlation between the number and frequency of prayer and improved chances for those being prayed for. Indeed, there was a slight negative correlation, the study concluded, which the researchers ascribed to patients’ disappointment in letting down those who prayed for them.
While not a fan of prayer, Hitchens does reflect on how he now understands the importance of morale, and can already see the pernicious effects of flattering well-wishers saying, “if anyone can beat this, you can;” “cancer has no chance against someone like you.” He is left with a secular feeling that “If I check out, I’ll be letting all these comrades down.”
Since we all know in the back of our minds that we will die, holding up the sword of certain victory will surely prove wearying for intrepid optimists.
“Tumortown,” Hitchens’s November’s installment, coincides with this moment in my memoir writing. Here he seems to have finally named his new environment and offers advice from his medical journey. He begins with a passage from John Updike’s 1971 Rabbit Redux, where the main character believes that a cure for “the big C” is just around the corner and thus the side-effect tradeoffs are worth taking if there is a chance of more life time. He is today’s paradigmatic optimist.
Taking note of the strange terminology of the war on cancer and the exhortations to battle, Hitchens “can’t shake the feeling that it is the cancer that is making war on me. The dread with which it is discussed—‘the big C’—is still almost superstitious. So is the ever whispered hope of a new treatment or cure.”
Alien enemy. Deep fear. Secular superstition. Hope. These are elements of an optimistic patient archetype—and brew for a very bumpy journey, it seems to me.
Like all of us with terminal prognoses, Hitchens faces a deluge of advice, truly information overload riddled with unfamiliar languages. The pull quote for this section is telling: “In Tumortown you sometimes feel that you may expire from sheer advice.” Actually, this is not metaphor: the advice you take leads to choices you make that are indeed bets on matters of life and death.
After dismissing essentially all alternative medical approaches, which he epitomizes, so to speak, as “granulated essence of the peach pit,” Hitchens turns to “the world of sanity and modernity.” Here he is plagued by well-informed people insisting that there is one greatest doctor or clinic, which of course are located all over the place and can’t possibly all be visited. Even in modernity, “the citizens of Tumortown are forever assailed with cures, and rumors of cures.” And even Hitch can’t resist trying one far-off fabled clinic with predictably disappointing results.
At this point his medical experience is tied to oncology. It is “an exhilarating and melancholy time to have a cancer like mine,” he says. This is a good generalization of the ups-downs built into the pursuit of hope. The upside is the wonders of today’s chemo cocktails and other technologies, while the downside is the feeling that a cure lies just around the corner, but too late for me.
This zigzag may repeat multiple times within the optimistic journey. Hitchens recounts one such period, beginning when he was “hugely excited” by a new gene-engineered immunotherapy protocol from National Cancer Institute researchers designed to charge up the immune system to resist the cancer. All he had to do to qualify was have the tumor express a certain protein, which it did, and have immune cells with a particular molecule held by half of those with European or Caucasian genes. Unfortunately, “my immune cells declined to identify as sufficiently ‘Caucasian’ … and I can’t forget the feeling of flatness that I experienced when I received the news.”
Another episode the same week sets off fifty emails from friends triggered by a 60 Minutes segment on an esophageal cancer patient treated with experimental “tissue engineering.” This approach uses stem cells to grow parts of a new esophagus. Excited, he calls his friend Francis Collins, who gently but firmly tells him it would not work for metastatic cancer.
One of the ironies of Hitchens’s life as a combative atheist is that his most scientifically advanced advisor is a sometime debate partner, Francis—renowned scientist, the government’s leader in genome sequencing, and an avowed Christian. Now the director of the National Institutes of Health, Collins is truly a remarkable man, perhaps the most prominent bridge between science and religion, and Hitchens is fortunate to have him as a trusted counselor. Where they agree is on the “maniacs” who oppose stem-cell research on discarded embryos. Indeed, Hitch ends this essay with an invitation: if you want to join the “war” against cancer, “then join the battle against their lethal stupidity.”
But it is how his personal story ends that matters. Hitchens’ response to being turned down for a number of trials is a determined “best perhaps to get these false hopes behind one quickly.” Yet it is depressing. “Analyzing the blues that I developed during that lousy seven days, I discovered I felt cheated as well as disappointed.” Apparently he felt he hadn’t fulfilled Horace Mann’s admonition—“Be ashamed to die until you have won some victory for humanity” (motto of Antioch College, where Mann was the first president)—by not qualifying for experimental drugs or surgeries.
“So I have to trudge on with the chemo routine, augmented if it proves worthwhile by radiation and perhaps the much-discussed CyberKnife for a surgical intervention; both of these things near-miraculous when compared with the recent past.”
This patient, in awe of science and swimming in the best advice available, nevertheless doesn’t really understand what his options are. CyberKnife, with which I am intimately acquainted, is a relatively new method for delivering highly-concentrated, highly-precise radiation, not a surgical technique. Nothing gets cut. For a patient trying to juggle lots of confusing information, this is understandable. What is surprising is that his Vanity Fair editors and fact-checkers missed this glaring and misleading error.
I have only a fragment of Hitchens’s experience in his writing, but from my insider terminal viewpoint it appears that Hitchens isn’t really paying attention to his immediate Stage IV future. Since a number of his organs show metastases, he normally wouldn’t qualify for radiation, much less surgery, so perhaps his confusion over options is moot. We don’t know the outcome of his chemo, but if the first-line treatment had successfully halted the cancer, he probably would have reported it here. My guess is that he is irretrievably terminal, like me.
It’s possible that Hitchens is caught a bit in the depression that lies in the gap between negotiation and acceptance. I anticipate that he will or has reached acceptance, which he dismissed as “bliss,” and reflect on this stage in a future essay. With acceptance, he will be in a more settled frame of mind as he continues his ever-cogent and stimulating commentary on his approach to dying and death.
To repeat what I said earlier, this is a brave man, putting his terminal self out in public. It is, I’ve learned, a rare thing to do. Yet, as everyone inevitably reaches this point, many people appreciate the opportunity to see how others manage a diagnosis they cannot imagine receiving.
We all become terminal patients, but this is only part of the story. Doctors anchor the other part of the dynamic that drives the medical machine in the last stages of life. They, too, will become terminal, and are thus best positioned to bridge the divide.
I'm about to give a series of workshops ("Managing a Remote Workforce") and to make sure I'm current on the best thinking, I naturally did my (re)search by googling that title.
Up came this great white paper, Managing a Remote Workforce: Proven Practices from Successful Leaders, from my old friends and colleagues, Jim Ware and Charlie Grantham. Their research was sponsored by Citrix, the gotomeeting folks.
Here are five practices that I've "stolen" (with their permission) for what I'm presenting today and tomorrow:
1. Develop formal, explicit, strategic programs with senior management sponsors
2. Work differently
- Redesigned business processes
- New technologies
- New ways to communicate
- Outcomes measured, rewarded not monitoring employees
3. Training is critical
4. Collaboration technologies are central to success
5. Unsuccessful without thoughtful planning; aggressive implementation; significant organizational, cultural change
Mo-unique.
Nonpareil.
Beautiful.
Compassionate (this eulogy she gave for her chemo buddy is the paradigm of how it can be done with grace and humor).
Insightful (as in her book, How Can I Help? Everyday Ways to Help Your Loved One Live with Cancer, with practical advice for the people who ask the question and for those who have to answer it).
Practical (as in her book, written with Hope Ricciotti, The Real Life Body Book: A Young Woman's Complete Guide to Health and Wellness).
And above all courageous. Who else could write a hilarious book called The Courage Muscle: A Chicken's Guide to Living with Breast Cancer?
All of these books written, by the way, post-diagnosis.
Monique came to visit a few days after my husband was diagnosed with his terminal cancer, she in her 8th, or 18th, or 80th, it seemed, year of endurance. Metastatic breast cancer. She who was in treatment herself came to visit one who was about to enter the world of chemo and radiation and blood counts and tumor markers. In spite of all she was going through, she had the will to visit someone just beginning.
Before all this, Monique and I had become friends, principally on the phone, which is an excellent way to get to the heart of things. Which we did. Then, after Jeff began receiving treatment, we were often on that floor of the hospital that no one wanted to visit at the same time, which gave us time for more visits, more deepening.
Last week, I'd heard from Monique's childhood friend, Stuart Sadick, also a friend of mine, that the end was near... and I just saw that it had come on his Facebook page. Late last night.
A lot of people are crying today... and laughing. Thank you, dear person, for redefining a whole category of experience.
I wish Dr. Seuss were around to write a rhyme for this phenom. It would have to begin...
As different as different as different can be
Her name was Monique and she was so fun-ny...
And who says newspapers are dead? Not these two-yr-olds.
Jeff Stamps, age 15, US Junior Nationals Alpine Competition
For the fourth year running, I'm one of hundreds of bloggers staging the Engage with Grace rally to encourage people to think about end-of-life issues. Much has happened in our family since I started participating, including learning the (still) shocking news in May 2010 that one of our central family members -- Jeff Stamps -- was going to die. And then he did on June 11, 2011.
In the course of the 13 months from Jeff's diagnosis of Stage IV pancreatic cancer to his death, we talked about the five questions below quite frankly both with each other and with friends.
By the time Jeff was in the final moments approaching death (in his case, a relatively short period during which he was no longer able to communicate -- about 36 hours in total), I was very clear about his wishes, right down to which room he wanted to die in, what music he wanted playing, which candles I should burn from our collection (Jeff loved candles and lit them every night), and whom he wanted nearby. He even wrote a song for our grandchildren that was sung at his funeral.
As deaths go, Jeff's was a magnificent one. Preparation was everything. Not everyone has the good fortune, if you can call it that, that we did. His diagnosis was unequivocal and medicine had very little to offer (though his willingness to endure treatment, including chemo and very high-tech radiation, may have extended his life). He also was a great and inspiring realist, as his eulogists all said. Here's what our friend Ben Taylor told the Boston Globe: “He decided almost from the moment he received this diagnosis that he wasn’t going to be angry, bitter, or depressed. He was going to accept it and make the most of the time he had left. He showed us all how to die and was an inspiration to every one of us.’’
Since Jeff died, I've talked to many others who've lost spouses (and parents, children, relatives, dear friends and colleagues). Many loved ones died suddenly, including those with terminal cancer where the patient and family had not been clearly told that death could be come at any moment. Some admit they were in denial. And we all know cases where someone didn't want to know that their illness was terminal. Because sudden death is so common ("she went upstairs to get a book and had an aneurysm;" "he had a massive heart attack while walking to work;" etc), we need to bring death into our line of sight, into the middle of our conversations.
For all the blather in our society about "death and dying," I've experienced very little natural conversation about it. We're still wincing and avoiding the topic. Try listening for it in the course of a day, the course of a week, and see how often it comes up. Let's bring it up.
Meanwhile, read on for the official text of the Engage with Grace blog rally, includuing the five critical questions:
Occupy With Grace
Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.
Seems almost more fitting than usual this year – the year of making change happen. 2011 gave us the Arab Spring – people on the ground using social media to organize a real political revolution. And now – love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.
Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about…it’s an issue we have the luxury of being able to hold hands about.
It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.
It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.
And it’s driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you’re all on the same page. In the words of the amazing Atul Gawande – you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace…
Here are the five questions – read them, consider them, answer them (you can securely save your answers the Engage with Grace site, www.engagewithgrace.org), share your answers with your loved ones. It doesn’t matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.
Boston Globe runs a weekly pick in the book review section which I wish I could link to so I'm just going to have to steal the whole thing (can't find it after numerous searches...something must be going on with the digital department now that the Globe has switched over to its sleek new look). As keen readers of Endless Knots know, rarely does a Roland Merullo plaudit go unmentioned. Even nicer that this mentioner is a great writer (and friend):
Ellen Meeropol of Odyssey Bookshop in South Hadley recommends "The Talk-Funny Girl" by Roland Merullo (Crown). The rural southwesterm Vermont setting in MEurllo's new novel is rich with details abourt a way of life that is both out of the mainstream and worlds away from the popular cliches of rural poverty. Combined with the particular darkness of young Marjorie's family and her resilience and strength, this makes for a provocative, layered, and powerful read.
Whoever thought this would become a problem back in the 20th century? How much time do you spend searching for the clever password you used for some random site? Time to upgrade your passwording skills because there are a bunch of REALLY bad ones according to this post by Zoe Fox for Massable that's making the rounds. For example, don't use "password." More from the article:
SplashData created the rankings based on millions of stolen passwords posted online by hackers. Here is the complete list:
It's impossible to know the right thing to do after someone close dies. We try all kinds of things. Walking. Talking. Weeping. And then there's something unexpected.
Dana-Farber Cancer Institute in Boston offers grief support groups for families of patients who've died. My husband was only treated briefly at Dana-Farber. Treated is even too strong a word. Two months before he died, he entered a small clinical trial in which an old anti-malarial, hydroxycholoroquine, was being used to stem pancreatic cancer. A very long-shot. Very. And by the time he started the trial, eight weeks before he died, he was already very ill. But, being Jeff Stamps, he thought it might be helpful for someone else ...
He made it through two rounds of the drug before he was too sick to continue. So our entire tenure at Dana-Farber was only one month long (as compared with the 13 months of excellent treatment he got a the hospital across the way, Beth Israel Deaconess).
A month or so after Jeff died, I got a very nice letter, a helpful booklet, and an invitation in the mail. Dana-Farber was holding a grief support session for people who'd recently lost family members. I went and there found about a dozen others, most of whom, like me, had lost their mates. The social worker asked if any of us would be interested in joining a regular group, which I did about a month later.
That group, led by Sue Morris, Director of Bereavement Services at Dana-Farber and author of Overcoming Grief, just concluded after six sessions. There were nine of us in all, six women, three men, most long hetero marriages, one gay couple, all of us not wanting to be there at all but all of us returning week after week. I raced up from weekends in New York on at least three of the weeks, raced because I couldn't miss it.
What we knew together was what no one wants to really understand because you can't until you're in it. And there's no way to hurry out of it. We cried together, looked at the pictures of the mates who'd died, nodded until our necks hurt when someone said something that was barely a fragment of a sentence because the rest of us knew where that string of words was headed.
I was surprised that Dana-Farber, where I barely recognized a soul, offered these sessions and that Beth Israel, where I knew and had become friends with many people, did not. Daughter #1 made an interesting observation: the death rate at Dana-Farber, being a cancer hospital, was likely a helluva lot higher than at the academic medical center across the street. I recently came across a statistic that only 56% of people with cancer survive. It's a crazy stat since 100% of us will die -- and what does 56% survival mean anyway? But the point remains -- I'm pretty certain that more patients die at a cancer center than do at a regular old hospital.
A few weeks ago, one among us, Sue Robertson, above, a classical pianist and a writer, said that she hadn't been able to play since her husband had died. I understood. I haven't been able to write since mine died (I know, I know, this is writing but not the kind of writing I want to be doing - and I know I'll get there). And in that session, she decided to see if she could play at the hospital. Which she did. Three times now the custodians at Dana-Farber have rolled out their grand piano, including this past Monday, when Sue played before our last session. Most of us were there to listen. Many of us (ahem) cried.
Beautiful... and thank you, Sue, Barbara, Mary Ann, Dagmar, Doug, Margaret, Jim, James, and our counsellor, Sue. Well done, Dana-Farber. I'm really grateful to "you" for the weeks of support...
They even comped our parking tickets.
Quite the line-up tonight at Boston Public Library when Sylvia Nasar, author of Grand Pursuit (and A Beautiful Mind and Knight Professor at Columbia Graduate School of Journalism and my adored college roomie) engages in conversation with 1998 Nobel Laureate in Economic Sciences Amartya Sen, thinker extraordinaire, and accomplishments too long to list. Economic historian Claudia Goldin, president-elect of American Economic Association, is the moderator. 6-7:30, Rabb Lecture Hall, Copley Square Main Library. Here's one (of many) rave(s) for Sylvia's book. See you there!
