A few authors and publications have helped make thinking and talking about death and dying much easier for me this past year, for which I am very grateful.
One significant health book for me was "Being Mortal" by surgeon and author Atul Gawande. He describes in vivid, heart-wrenching detail the final days of patients who are often in such denial of their imminent deaths that they, or their families, demand futile lifesaving measures. Meanwhile, his own profession treats aging, frailty and death as if they are simply clinical problems to solve or delay. I also wrote about Gawande's article in the New Yorker concerning health care directives, another favorite topic of mine this year. Gawande recommends creating advance care directives to avoid the avalanche of unnecessary medical care that can harm patients both physically and financially.
In addition to Gawande, it was Oliver Sacks who most riveted my attention on these issues this year. A neurologist, he is the author of many books, including "Awakenings" and "The Man Who Mistook His Wife for a Hat." In Febuary 2015, I posted the text of the op-ed piece he wrote in the New York Times after learning his cancer had metastasized. Here's one quote from the author:
"Although it’s up to me as a neurologist to diagnose the disease and to think in therapeutic terms, I always want to address the person as much as the disease, and I’m very glad my own doctor feels similarly. I’m not just a case to him, I’m a person responding to the situation. So I somehow sit between the biology and the humanist point of view."
Sacks has inspired me to look for care providers who take this approach.
Talking About Death Can Make You Happy
A friend recently sent me a BBC report on how people in Bhutan, which is rated as one of the happiest countries in the world, believe that talking about death at least once a day will generate happiness. Instead of avoiding the topic of death altogether, embracing its inevitability and mentally preparing for “the moment we cease to exist” may help us focus on leading happier, richer lives. Although it seems counterintuitive at first glance, this make sense to me.
I figure I'm likely to make my own final exit in the next year or two. If and when my Parkinson's disease brings me close to being fully immobilized, I plan to arrange my own final exit. Similarly, if I should join the 50 percent or more of Parkinson's patients who develop some form of dementia (which seems increasingly likely), I again plan to arrange an early exit timed to occur when I'm on the verge of no longer being able to communicate as John Schappi.
So, the end of life will continue to be a major topic for me throughout this year. This is my own way of coming to terms with my circumstances and sharing my musings.
Another Inspiring Text
Throughout my posts in 2016, I predict you'll also hear lots of references to a book that is now only in draft version. The tentative title is “Choose life! Sharing an Unexpected Cancer Journey with a Long-Lost Friend.”
I am privileged to have been given access to this draft, which is based on an extensive email exchange shared between two of my closest friends. One, Loene Trubkin, had been an outside (i.e. non-employee) member of the former Bureau of National Affairs' (BNA) board of directors. She has been battling cancer for years and has undergone extensive chemotherapy treatments. The other correspondent, Hugh Yarrington, had an interesting career with BNA as well. Hugh had always enjoyed excellent health and was stunned when he was diagnosed with multiple myeloma and told he could expect to live only 12 to 18 more months.
Hugh quickly emailed Loene for advice, which started an exchange that became big enough to fill a book or two. Leone selected and lightly edited the emails to create the draft for this book.
You probably think this material sounds depressing and/or boring. Not so. With the withering away of my attention span these days, I have difficulty staying with a book or even a magazine article. However, I've been mesmerized by this text and can't wait to get back to it as soon as I finish this post. I find it more uplifting than depressing.
Their dialogue has given me a lot to think about. For example, Hugh was a longtime advocate for a patient's right to arrange his final exit if the alternative involved drawn-out, extensive, unpleasant medical treatment. But, at the end of his own life, Hugh did not make the choice he had advocated for. I am waiting to see if he discusses his choice with Loene. In any event, his end-of-life story makes me less certain that I will carry out my own early exit plans.
Hugh passed away on November 12, 2012. I published a blog post with excerpts from Hugh's emails to me, but Loene's contributions in their email exchanges really make their dialogue thought-provoking and rewarding.
I hope some publisher is smart enough to get this book out to the wider audience it deserves.