Wednesday, August 1, 2012

Let's Talk about Suicide, Facing Death, and Dudley Clendinen

"We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull."  -- Dudley Clendinen -- 1944-2012
I started to write this post a few days ago, after members of my Parkinson's support group spoke about suicide. All of us had thought about it; some had thought a lot about it.

Suicide is a topic we can't easily discuss. We don't even want to use the word "death." When a dear friend died last week, her wonderful daughter called to tell me her mother had "passed." I'm pretty sure the daughter doesn't believe her mother has gone to heaven or into some other afterlife. Still, she avoided saying her mother had died.

Over a year ago, I wrote a blog post about Dudley Clendinen, the author of a provocative article for the New York Times Sunday magazine. His piece carried the eye-catching title: "I Will End My Life by My Own Hand When the Time Is Ripe."

Clendinen, a former national correspondent and editorial writer for the Times, had been diagnosed in November 2010 with amyotrophic lateral sclerosis (ALS, "Lou Gehrig's Disease"). His doctors told him he had 18 to 36 months to live.

ALS basically comes in two forms. One starts with the progressive death of nerves and muscles in the hands and feet, and continues from there. The other, called bulbar ALS, begins in the mouth, throat, chest, and abdomen. Clendinen had this second form of the disease; since it affects breathing from the start, death comes sooner.

Clendinen decided to use his remaining time to "defang" -- his word -- the subject of death. That Times article was one of his many public discussions about his disease, which he called "Lou," and his impending death.

I wondered what had happened to Clendinen when I began this new post about suicide. A quick Google search brought me the news: he had died two months ago. I read many of the remembrances and obituaries, and I read more pieces Clendinen had written, too. This talented man covered all the points I'd hoped to make... and far more eloquently than I could have, so -- in much of what appears below -- Clendinen speaks again from the grave.

Clendinen's Final Exit
Reading about Clendinen's life was like looking in a mirror. He was a gay man and a recovering alcoholic. He had been married, but the marriage ended in 1970 when he "came out" to his wife and his daughter. I came out to my wife, son, and daughter in October, 1969. I got sober the next year; Clendinen waited until 1990, when he was about the same age I was as my own recovery from alcoholism began. In last year's New York Times piece, Clendinen wrote:
For 22 years, I have been going to therapists and 12-step meetings. They helped me deal with being alcoholic and gay. They taught me to be sober and sane. They taught me that I could be myself, but that life wasn't just about me. They taught me how to be a father. And perhaps most important they taught me that I can do anything, one day at a time.
He worked as a reporter and editorial writer for the New York Times. He authored several books, including Out for Good: The Struggle to Build a Gay Rights Movement in America, and A Place Called Canterbury: Tales of the New Old Age in America. When he died, Clendinen was working on a book about death and dying. I'm hoping it will be published.

He was living in Baltimore at the time of his diagnosis. In 2011, he joined his good friend and radio show host Tom Hall every other week to discuss his disease -- "Lou" -- and his impending death. The show was called "Living with Lou: Dudley Clendinen on a Good, Short Life."

In his writings, interviews, and public talks over the past two years, Clendinen talked openly about his plan to end his life -- "a way that's quiet and calm." He didn't get any more specific.

He was legally responsible for his mother and two aunts during their terminal illnesses. Those three women would have died years earlier of natural causes, were it not for "medical technology, well-meaning systems, and loving, caring hands." He spent hundreds of days at his mother's side during the last several years of her life while "she looked at me, her only son, as she might have at a passing cloud."

Clendinen said he didn't want that same experience for his daughter, or "anyone who loves me. Lingering would be a colossal waste of love and money." Leaving his beloved daughter would be "the one thing I hate," he said. "But all I can do is give her a daddy who was vital to the end and knew when to leave."

At the end, Clendinen did not take his own life. He received care at his home from his housemate and good friend until the end. He finally agreed to be admitted to a hospice, but he was there only a few hours before he passed peacefully away. Hmmm. There I go, like my friend's daughter, finding another way to say he "died."

A year ago in the Times article, Clendinen wrote:
If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know. 
I’d rather die. 
He continued to refuse the tracheotomy but his radio friend Tom Hall observed that Clendinen's position on other life-extending technology changed when he received the contract to write a book. Hall explains:
In February when he could no longer swallow comfortably, he accepted a feeding tube to get enough nutrition to keep him sustained so he could write.... Dudley talked about how conflicted he was about employing medical interventions he once thought he wouldn't want to use, but also how happy he was to have this opportunity to write one last book....While he didn't live to see it published, it will be the final gift that he leaves us.
My Reflections 
I understand Clendinen's decision to keep going, and not opt for self-deliverance. Most of the people in my Parkinson's support group are farther down the road in the disease's progression than I am. One of our members who is suffering the most -- let's call him Edgar -- has been talking about how much he's looking forward to taking lessons on the banjo he recently ordered. Edgar has never played a banjo, but decided he wanted to experience the joy of creating his own music.

When my PD group discussed suicide last week, I said that not long ago I was sure I'd board a plane for Switzerland -- the only place where assisted suicide is available to non-residents and residents -- before my disability reached Edgar's stage. But Edgar and others had impressed me with their determination to make the best of the cards they'd been dealt, one day at a time, and to do so with humor and class.

Will I jet off to Switzerland for a "final exit" if my Parkinson's or prostate cancer starts messing up my quality of life for real? Who knows?. But it's comforting to know I have options. Here's what Clendinen said about having that choice:
I respect the wishes of people who want to live as long as they can.  But I would like the same respect for those of us who decide -- rationally -- not to.
His comment reminds me of a bumper sticker I saw years ago: "Against abortion? Don't have one." Maybe I'll  order a bumper sticker that reads: "Against suicide? Don't do it."

What about an Alzheimer's diagnosis? I might consider the self-delivery option more seriously. But, again, who knows? Last year, a good friend who had watched his mother and uncle live with and die from Alzheimer's told me he thought they were at least as happy after the diagnosis as they were before. He concluded:
A person with Alzheimer's may have a more limited set of material with which to construct reality, but fundamentally the Alzheimer's patient's job is no different from anyone else's: Put it all together, make sense of it, and make peace with whatever sense you've made of it. This is a skill we practice and hone throughout our lives.
Good point. I might just be happier living with Alzheimer's than living through the final stages of  Parkinson's or cancer. Here's how I replied to my pal:
For me, the issue isn't whether I'd be happy or miserable in the fog of dementia. I feel strongly that my generation was the lucky generation for the 20th Century -- too young to have to fight in WWII but just old enough to participate in the postwar Golden Age in the U.S. economy. My son and daughter, my three grandchildren and my two great-granddaughters are growing up in a much more difficult time. I want to share my good fortune with them, not have it wiped out keeping me alive.
I'd add another factor that tips the balance in favor of the suicide choice for me. While I might be "at least as happy" living with Alzheimer's as I was before, I'm sure my family and close friends wouldn't be. I would hate putting them through the prolonged agony that Nancy Reagan -- just one example -- experienced.

Contemplating Death Can Be Good for Us
Let's end on a positive note. In a study published earlier this year, University of Missouri researchers reviewed dozens of studies and concluded:
The awareness of mortality can motivate people to enhance their physical health and prioritize growth-oriented goals; live up to positive standards and beliefs; build supportive relationships and encourage the development of peaceful, charitable communities; and foster open-minded and growth-oriented behaviors.
Before we dismiss that conclusion as academic gobbledygook, here's what Steve Jobs said in his 2005 commencement address at Stanford:
Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Because almost everything -- all external expectations, all pride, all fear of embarrassment or failure, these things just fade away in the face of death, leaving only what is truly important -- There is no reason not to follow your heart.
A final word from Clendinen:
This is not about one particular disease or even about Death. It's about Life when you know there's not much left. That is the weird blessing of Lou. There is no escape and nothing much to do. It's liberating.

No comments:

Post a Comment