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Lobster

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I hope it is okay to post this whole article. It is not one of the articles behind the site's pay wall. It is one of the free access articles.

The New York Times
July 9, 2011
The Good Short Life
By Dudley Clendinen


I have wonderful friends. In this last year, one took me to Istanbul. One gave me a box of hand-crafted chocolates. Fifteen of them held two rousing, pre-posthumous wakes for me. Several wrote large checks. Two sent me a boxed set of all the Bach sacred cantatas. And one, from Texas, put a hand on my thinning shoulder, and appeared to study the ground where we were standing. He had flown in to see me.

“We need to go buy you a pistol, don’t we?” he asked quietly. He meant to shoot myself with.

“Yes, Sweet Thing,” I said, with a smile. “We do.”

I loved him for that.

I love them all. I am acutely lucky in my family and friends, and in my daughter, my work and my life. But I have amyotrophic lateral sclerosis, or A.L.S., more kindly known as Lou Gehrig’s disease, for the great Yankee hitter and first baseman who was told he had it in 1939, accepted the verdict with such famous grace, and died less than two years later. He was almost 38.

I sometimes call it Lou, in his honor, and because the familiar feels less threatening. But it is not a kind disease. The nerves and muscles pulse and twitch, and progressively, they die. From the outside, it looks like the ripple of piano keys in the muscles under my skin. From the inside, it feels like anxious butterflies, trying to get out. It starts in the hands and feet and works its way up and in, or it begins in the muscles of the mouth and throat and chest and abdomen, and works its way down and out. The second way is called bulbar, and that’s the way it is with me. We don’t live as long, because it affects our ability to breathe early on, and it just gets worse.

At the moment, for 66, I look pretty good. I’ve lost 20 pounds. My face is thinner. I even get some “Hey, there, Big Boy,” looks, which I like. I think of it as my cosmetic phase. But it’s hard to smile, and chew. I’m short of breath. I choke a lot. I sound like a wheezy, lisping drunk. For a recovering alcoholic, it’s really annoying.

There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.

No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.

I think it’s important to say that. 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. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.

And that’s the point. 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.

I began to slur and mumble in May 2010. When the neurologist gave me the diagnosis that November, he shook my hand with a cracked smile and released me to the chill, empty gray parking lot below.

It was twilight. He had confirmed what I had suspected through six months of tests by other specialists looking for other explanations. But suspicion and certainty are two different things. Standing there, it suddenly hit me that I was going to die. “I’m not prepared for this,” I thought. “I don’t know whether to stand here, get in the car, sit in it, or drive. To where? Why?” The pall lasted about five minutes, and then I remembered that I did have a plan. I had a dinner scheduled in Washington that night with an old friend, a scholar and author who was feeling depressed. We’d been talking about him a lot. Fair enough. Tonight, I’d up the ante. We’d talk about Lou.

The next morning, I realized I did have a way of life. 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 how 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.

Including this.

I am, in fact, prepared. This is not as hard for me as it is for others. Not nearly as hard as it is for Whitney, my 30-year-old daughter, and for my family and friends. I know. I have experience.

I was close to my old cousin, Florence, who was terminally ill. She wanted to die, not wait. I was legally responsible for two aunts, Bessie and Carolyn, and for Mother, all of whom would have died of natural causes years earlier if not for medical technology, well-meaning systems and loving, caring hands.

I spent hundreds of days at Mother’s side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have at a passing cloud.

I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.

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. 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. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways. I just have to act while my hands still work: the gun, narcotics, sharp blades, a plastic bag, a fast car, over-the-counter drugs, oleander tea (the polite Southern way), carbon monoxide, even helium. That would give me a really funny voice at the end.

I have found the way. Not a gun. A way that’s quiet and calm.

Knowing that comforts me. I don’t worry about fatty foods anymore. I don’t worry about having enough money to grow old. I’m not going to grow old.

I’m having a wonderful time.

I have a bright, beautiful, talented daughter who lives close by, the gift of my life. I don’t know if she approves. But she understands. Leaving her is the one thing I hate. But all I can do is to give her a daddy who was vital to the end, and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in Baltimore. I want to take the sting out of it, to make it easier to talk about death. I am terribly behind in my notes, but people are incredibly patient and nice. And inviting. I have invitations galore.

Last month, an old friend brought me a recording of the greatest concert he’d ever heard, Leonard Cohen, live, in London, three years ago. It’s powerful, haunting music, by a poet, composer and singer whose life has been as tough and sinewy and loving as an old tree.

The song that transfixed me, words and music, was “Dance Me to the End of Love.” That’s the way I feel about this time. I’m dancing, spinning around, happy in the last rhythms of the life I love. When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over.

It’s time to be gone.



Dudley Clendinen is a former national correspondent and editorial writer for The Times, and author of “A Place Called Canterbury.”
 

Ms. Pie

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Yes. Thank you for posting this. :)
 

cervus

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ccurths

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Yes thank you,
It's a decision we pals have to deal with. How much do I do to keep going? It's a very personal decision.
 

Bhappy

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Thanks! Greatly written.
 

notme

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I've lost my entire family to one disease or another. I've watched them all die slow, insidiously painful deaths. Two brothers died from AIDS before we had all the drugs that suppress HIV.

My dad (the one that raised me, not the one that donated the sperm) died of lung cancer. Slowly and painfully. My mom--the one that raised me--was dropped off at a nursing home and left to slowly deteriorate by her loving daughter (no, not me) My real mom died of a disease just as insidious as the ones that took the others--depression--that caused her to walk in front of a car (I often wondered how he felt when he hit her--he had been drinking--but he was only the tool she used to end her unhappy existence)

My real dad died from an aneurysm. I'd been taking care of his health issues--drove 2k miles to make sure he was taken care of (at his request) only to have him die two weeks later from a brain stem stroke caused by a bleed from years of undertreated diabetes. His mind was going months before.

There is no one left but my daughter. The one thing in my life that makes it worth living.

I can understand the writer of this post. My daughter will NOT have to watch me die slowly. I won't put her through that. It doesn't lift--the final memories that should be of the good times get diminished by the horror of watching those we love die. Those are the memories that keep me up at night.

I understand the plan. The other thing I will NOT do to my daughter is tell her about it. I won't make her wonder if she should have done something to stop me. I won't let her spend one minute wondering why I didn't love her enough to fight and stay with her. But when/if I get to the point that I know I have nothing left to positively offer in this life, I'll go on to the next.

The right to die is one that should be left to the individual--not the state, the government, the family or the church.

I think people can be productive a long time with many illnesses. But--when they have had enough, who are we, their loved ones, to demand they stay when what makes them feel useful is gone?

I know my choice. It's right for me for a lot of reasons. It wouldn't be right for many others--but it's right for me. I applaud the caregivers that spend every waking minute caring for their loved ones. I applaud the PALS that fight to survive this disease--and they fight with dignity and grace. They are here--we 'chat' with them via posts. They are finding their own ways to feel useful (and ARE useful). I plan on sticking around as long as I know I'm still able to be a useful member of society--and not one minute longer.

Technology has made things so much better--PALS can communicate longer, interact with loved ones and friends. They show a courage that is amazing. They are here--they post daily.

But--when the pain and suffering are too much--I think they have the right to chose their own end. So much has been taken by disease--the way they end their lives should be a personal choice left to them.

The God I believe in understands, I think.
 

KC2U2

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This response represents my feelings, I didn't write it but well said :


Like Dudley Clendinen (Op-ed: The Good Short Life, July 9th), and some 30,000 others in this country, I suffer from ALS, a catastrophic and cruel disease if there ever was one. I am usually glad to see an article in the press about ALS as a corrective to the general public ignorance about the disease, yet Mr. Clendinen’s piece left me fuming. To me it expressed the passivity we are prescribed when told confidently by our doctors to go home, try to stay cheerful, and prepare to die. Why use the valuable platform of a New York Times op-ed to pitch to readers the idea that ALS is a hopeless cause?

I’m not referring to his planned suicide. In fact, as he suggests, a difficult but weirdly empowering aspect of ALS is that we are left individually to decide at which point along the grimly foreseeable trajectory of the disease we’ve had enough, and want to check out. If we choose to let nature take its course, respiratory failure will kill us in a statistical average of 22 to 36 months. If we agree to a tracheotomy (mechanical ventilation), we may live many years, but in a much compromised state. I fully respect the decision to dispatch oneself before things get really ugly (though I myself am in it for the long haul). As Mr. Clendinen points out, being free to govern ourselves in this illness is key.

Unfortunately, unless we are either super rich or on Medicaid, our freedom to choose to live is limited. Only a fraction of ALS patients in the US decide to undergo a tracheotomy--perhaps 15%--and a prime reason is the expense. It is perverse that someone with the usual private, employer-based health insurance would be covered if the sickness were lupus or leukemia or AIDS, but, because it’s ALS, has to forgo an intervention that could extend his life by years, or subject his family to bankruptcy.

We need to fight for more research funding, which is woefully inadequate; for a health care system that doesn’t leave the catastrophically ill to fend for themselves; for changes in clinical trial and FDA procedures so that potential treatments for ALS don’t travel through the pipeline at a snail’s pace while drugs for obesity and erectile dysfunction whizz by; we need to lobby and advocate for ALS in the same way that breast cancer and heart disease and autism have won recognition as ‘causes’ that bring the dollars and legislation that can profoundly impact the sick and their families. The problem is that we die too quickly to be effective activists.

It is Mr. Clendinen’s right to envision a future self as a “withered, incontinent mummy” (why, though, the repeated reference to incontinence, which is not characteristic of ALS?), but this is reckless rhetoric if it persuades readers that there can be no quality of life for people with advanced ALS. In fact, recent advances like eye-gaze technology that allows a paralyzed person to use a computer and portable, laptop-sized ventilators are complete game-changers. I know of many such people who are grateful to be alive and leading meaningful lives— writing books, enjoying family vacations, watching their grandchildren grow, devoting hours to social websites lin order to offer invaluable practical advice and support to the newly-diagnosed.

I am happy that Mr. Clendinen has so many wonderful friends, endless invitations, and a lovely daughter. Like him, I quickly figured out the importance of safeguarding my happiness and joyful engagement in life in the face of the mammoth and ineluctable difficulties and disappointments ALS engenders. But there is a bigger picture that cries out for attention, and I am sorry there was no room for that on the op-ed page.
 

Lobster

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That is a powerful response. Would you mind telling me the author and source? I would like to send it to some friends and attribute it correctly.

Thank you.
 

KC2U2

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Yes, it was in a thread on on another site
 

Lobster

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Thanks, KC2U2.

Here are a couple of responses in the New York Times:

July 18, 2011
Ways to Think About End-of-Life Care

To the Editor:

In his July 15 column, “Death and Budgets,” David Brooks assures us that “we are never coercively going to give up on the old and ailing,” but then argues that “it is hard to see us reducing health care inflation seriously unless people and their families are willing to ... confront death and their obligations to the living.” Coercion comes in many forms. Creating an atmosphere in which the “old and ailing” are persuaded that their “obligations to the living” require them to hasten their own ends to avoid becoming a burden to their families and to society at large may not be the ugliest imaginable form of coercion, but coercion it surely is.

The best argument against what proponents of physician-assisted suicide call the “right to die” is the ease with which the right to die can be transmuted into the duty to die.

DOUGLAS ARONIN
Forest Hills, Queens, July 17, 2011


To the Editor:

David Brooks cites Dudley Clendinen’s desire to die before he is severely disabled by amyotrophic lateral sclerosis (“The Good Short Life,” Sunday Review, July 10). Mr. Brooks writes, “Life is not just breathing and existing as a self-enclosed skin bag.”

Without disputing Mr. Clendinen’s right to determine what constitutes his own meaningful life (or Mr. Brooks’s larger point that we need to do some tough thinking about medical spending), it must be said that even the severely disabled are not “self-enclosed skin bags.” The obvious example is the physicist Stephen Hawking, who has thrived with severe disabilities from A.L.S.

But there are also those who are cognitively disabled, who cannot walk or talk, yet can indeed love and learn and feel human connections, and who have a meaningful life and dignity.

ELIZABETH PICCIUTO
Silver Spring, Md., July 15, 2011
 
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