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.


Loene said...

Hi John, Thanks for this post. Death has been much on my mind recently. Preparing to travel for the first time in some years, I "put my affairs in order" so that, if the plane went down, something I never used to think about when I was traveling every month, my executor would be spared a lot of paperwork and meaningless mementos. Before I could board the plane, I ended up back in the hospital with an unpleasant but probably not life-threatening requirement for surgery. Nevertheless, I told my surgeon that rather than wind up as a vegetable, I'd prefer to die in the OR. He smiled at me and I knew then that I was giving instructions to the wrong person. Any surgeon would be the wrong person. I'm recovering (again!) but death remains on my mind in a way it never did before. I think it has to do with putting my affairs in order. If in fact I had done everything I needed to do to prepare for death, then this would have been a good time for me to die. I'm not afraid to die, I'm afraid to linger in some twilight state where I can't take care of myself. But the truth is I don't know now how I will feel about it then. Which is the point, isn't it? How do we prepare now to die with dignity when we don't know if, when that day comes, we'll still want to cling to life, whatever life may be at that moment. A banjo for Edgar, an improv class for me. Who knows what will spark our interest and renew our desire to live, even if others don't think of it as living . . .and neither would we a few years earlier!

Susan said...

I, too, have observed that many planning for a self-exit change their minds.  But I also want to preserve my estate for my family, for the same reason as you do. I feel sorry for young people today. Thus, I am grateful to have the information about Switzerland. I can't think of a more peaceful, inspiring -- that scenery! -- place to go in order to, well, go!

Artbangaroo said...

My Guru (Sathya Sai Baba) said "everything that happens is God's will".  I believe it's decided how we come into this world and how we leave.  
I'm not against suicide I just don't think it's really our choice.
Peace and Love, Artesia

Marlais Jacquish Soderquist said...

John, You are such an inspiration to all who read your blog.  I thoroughly enjoy everything you send us.  It keeps you ever in my thoughts and prayers.  You are loved.

Hugh Yarrington said...

I think most of us who hear a dire diagnosis must think a bit about suicide. It is the only way to retain absolute control over the time, place, and method of one's dying. I've thought a lot about my own experiences with dying parents and other relatives. I don't want my loved ones to have to go through all that suffering.  
I agree with much of what Clendinen has to say on this subject. It is worth noting, however, that many people find it easy to say they will take their own life when the time is right, but, like Clendinen, ultimately decide not to do it. I can't say what I will do if I am faced with such a decline in lifestyle that I don't want to live. I am a member of Dignitas, in Switzerland, and can decide on a quiet, dignified, painless death anytime I like. I don't know if it will come to that, but I am prepared with an organization I admire and trust if I need and want it. 

Thanks for this article, John. I haven't thought about this for a while and you caused me to run it back through my mind a bit. 

Kathleen said...

Like most I know, I have no wish to be the beneficiary of life-prolonging technology. Nor do I wish to see my loved ones suffer as they watch a long process, knowing there's only one outcome at the end of the day. I'd rather die, so to speak. However, I marvel at people I've known whose determination to cling to life under most difficult circumstances borders on awesome. I was at my husband's bedside when he died after days of gradual withdrawal from life support systems. The machines made a sudden and quite different sound and I knew without doubt that the end had come. Nurses appeared and unhooked the equipment and one turned to me and quietly said ... "We don't give up easily, dear. It will be awhile yet."  And it was awhile yet, and I will never forget her words or that afternoon and it makes me think that when the time comes, those who can fight, will.

Jackie said...

Given the honest and insightful comments thus far, it doesn't appear that the subject is one that we aren't willing to talk about.  But the mystery of what one might "do" or resist, whether consciously or subconsciously, remains.

Betrsy said...

if we can't talk about death, dying, and suicide...and we don't talk about our
own mounting ailments...what's left?  News, weather, and sports?

Kurt said...

Thanks for this - maybe your best yet.   I suggest you submit it for wider publication - NYT perhaps?
I went through the process of caring for and observing a number of friends with AIDS (and one with liver cancer) dying from 1983 - 1993.   There was no gap during that decade when I was not so engaged.    This included two lovers.   I had ample opportunity to observe and to learn from them.   Most recently it was my mother, who chose to remain in her own home with hospice care under my supervision.   I did not mind that she looked at me toward the end as though I "were a passing cloud."   That actually made it much easier to disconnect.  
My closest friend, Jim, for whom I had power of attorney and was executor of his estate, provided a powerful learning experience when he died on December 18, 1989 of AIDS.   He had been living with an AIDS diagnosis for just over one year.   After his initial hospitalization, he asked me to promise that he not be admitted to hospital again; it was a dreadful ordeal for him.   I agreed.   He visited his physician, an AIDS specialist, on 12/15/89 for an injection (AZT as I recall) and went out to dinner and a movie.    He was feeling progressively weaker over the next two days.   His "AIDS buddy" called me at work the morning of the 18th to report that Jim could not get out of bed, was having difficulty breathing, and wanted me to come over ASAP.   I was only a few minutes away and got there fast.   I sat down next to the bed and, after Jim looked at me and grabbed my hand, he lapsed into a semi-conscious state and stopped breathing shortly thereafter.  His AIDS buddy and I cleaned him up and waited an hour before calling his doctor and the mortuary.   I never considered calling 911.
The point of all this is that his physician was very angry and upset - and contacted the "authorities" to request investigation of Jim's death as an "assisted suicide."   Jim's body was removed to the coroner's office, an investigator searched his home, and I was interrogated.   We had done nothing to hasten his death, and an autopsy with blood analysis confirmed that.   It was simply his time.   I told the doctor that he had done everything in his power, that Jim had enjoyed his last year of life immensely, and suggested that the doctor forgive himself.   BTW, Jim was a military veteran, recovering alcoholic, and lapsed Catholic.    My biggest surprise?   He had made arrangements with the local parish priest for a funeral mass and purchased a plot in the Catholic cemetery. 

Thefrascas said...

I found your blog searching for information on anti-inflammatory foods/herbs,curcumin,  etc.  My daughter is in the early stages of a possible diagnosis for Juvenile Rheumatoid Arthritis, a chronic, lifelong auto immune disorder.  She is 3 years old.  I signed up to read your blog in the future because of your phenominal writing style and thought provoking topics.  Thank you for writing...I really enjoy reading!
Nicole from WV 

gleeson1929 said...

Thank, Marlais. Right back at you! -- John

gleeson1929 said...

As usual, an eloquent statement. Your last two sentences say it all. -- John

gleeson1929 said...

Thanks, Kurt. I'm not sure I'd have been able to respond to the doctor with the compassion you showed after his outburst of anger. -- John

gleeson1929 said...

And as all these terrific comments and stories attest, it 's certainly "different strokes for different folks." -- John

gleeson1929 said...

Now those words will be lodged in my mind. -- John

gleeson1929 said...

As you know, I too have the Swiss option in mind. But writing this post has reminded my of all the friends who I lost to AIDS in the 80's and 90's and how few of them opted out early even when this was a horrible way to die. For me, just knowing I have the early-out option is a comfort. -- John

gleeson1929 said...

For me, the Swiss option also would be like completing a circle. My father was born outside Zurich.