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Taking Charge of Your Life and Your Death


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I first met Dudley Clendinen in 1992 when he joined The Sun in Baltimore and was the editor for a lengthy narrative I wrote about a young man named David who was driving to his fiancee’s house when he was instantly sent into a coma by a drunk driver. Knowing of Dudley’s background as a former New York Times correspondent and editorial writer and then an editor at the Philadelphia Inquirer, I was delighted to work with him. He was stunned by the human drama, as was I, of David’s mother and fiancee watching him waste away and eventually wanting to let him die instead of keeping him alive artificially through feeding and breathing tubes.

But they didn’t have legal directives and had to fight the health care system. In a particularly gripping moment, the mother screamed at the attending doctor to let her son die of pneumonia, but the doctor’s training and legal concerns made him treat the pneumonia and David got well, continuing life in a vegetative state. It was a gut-wrenching tale that both Dudley and I took pains to share as accurately as possible. How we die, Dudley and I both felt, is as important an issue as any in life.

Dudley and I next met up 17 years later at Johns Hopkins University when he began teaching a nonfiction writing workshop in the writing program where I was on the faculty. He lived in Baltimore near the Homewood campus where he taught, and I lived in a Maryland suburb of Washington, D.C., and taught mainly at the DC campus. We kept promising to meet for a long dinner to catch up, trading many e-mails for a year.

Finally, last November, a perfect opportunity popped up that I thought Dudley would enjoy. I was invited to a black tie dinner for a beloved Hopkins doctor who was leaving Baltimore to start a medical school in a developing country. The affair at the Engineers Club in downtown Baltimore, would allow time for Dudley and me to catch up with each other’s lives over pre-dinner cocktails, and I thought he would enjoy meeting some Hopkins doctors, not a part of his writing world. So, although Dudley is gay, co-author of Out for Good: The Struggle to Build a Gay Rights Movement in America, I invited him to be my date for the evening. Ten days passed and I didn’t hear from him. I got back in touch. And then he let me know why my invite had not caught his attention.

He had just received a diagnosis of ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, and the news had brought his life to a momentary standstill. His landscape was changing. ALS is a progressive neurological disease that eventually paralyzes a person all over and has no cure. As a medical writer I have always considered ALS the most frightening, horrible disease anyone can get.

One of Dudley’s earliest symptoms was a slurring of speech because his tongue muscle was weakening. How much longer would he be able to teach and be understood, he worried. How much longer would he be able to walk? To eat? Swallow? Breathe? How much longer would he live? And would he want to go into that arc of life where paralysis has taken hold of his body and he would need to live with a tracheotomy to provide a pathway into his windpipe for a machine to breathe air into his lungs, and a feeding tube to keep from choking on food?

Dudley happily accepted the invitation to the Hopkins dinner and looked so handsome in his black tie garb. He was a perfect date, great conversationalist, and told me at the end of the evening, how much it meant to him to go to such an event as a way of carrying on a normal life in the face of his devastating diagnosis. He wondered if the vice chair of medicine we talked with a good bit at our dinner table would think he was drunk because the ALS caused him to slur some of his words. (She later told me she had not.) He asked me not to tell anyone of his diagnosis because he wanted to write letters to friends and family, letting them know. I have respected his privacy.

That evening, as we sat alone together talking before dinner, Dudley told me he resolved to end his own life before getting to the point of needing a breathing tube and feeding tube. While both he and I respect the right of everyone to go as far into this illness as they are able, I also respected his right to decide he doesn’t want to do that. Dudley says his biggest concern is not for himself, but for family and friends who would watch him die. He has a 30-year-old daughter he adores who lives near him. He does not want her to go through his loss of control over his own life. He wants to exit life in a cheerful and dignified way.

This year Dudley has been holding conversations with Tom Hall, a longtime friend, at National Public Radio. You can follow those here. Dudley’s caregivers join him at some of these interviews to explain the progression of ALS and what can be done to help.

Sunday, in the New York Times, Dudley wrote a poignant essay in which he shares his decision to end his life on his own terms.

Dudley, I salute you as an incredibly talented and moving writer, a smart and tenacious journalist, a very caring editor and teacher, an outstanding human being, a man of principle and dignity and great humor and friendship. I love you, my friend. So many of us raise our glass to you now and are with you at the time you decide it is your time to leave.

Your friend,

Mary

 

About the Author: Mary Knudson is a health journalist and co-author of Living Well with Heart Failure, the Misnamed, Misunderstood Condition. She writes the blog Heart Sense and teaches Writing Health Stories for the Public at the Johns Hopkins School of Medicine. You can follow her on Twitter as   @maryknudson .

The views expressed are those of the author and are not necessarily those of Scientific American.

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Comments 7 Comments

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  1. 1. OBagle 10:14 pm 07/11/2011

    ALS is only one of many blood-borne diseases caused by a symmetric immune response to a portion of a foreign DNA particle. There are just too many examples to list, but we know that Chronic Fatigue is most likely the result of either the XMRV or a Herpes virus, transmitted by blood-to-blood (as opposed to aerosol). We also know that attempts at a vaccine against SARS, H1N1 or other animal-derived virus carries unacceptable risk of autoimmune disorder. HIV-negative AIDS, Multiple Sclerosis, Rheumatism, and in fact any degenerative neurological symptoms should be treated as autoimmune.

    The answer for patients like Dudley is not to start estate planning earlier than expected, but to find the DNA sequence of the offending protein and shut it down. (RNA Interference, Nobel prize for Medicine in 2009, Craig Mellow/Andrew Fire, remember? Or was that all a gargantuan mistake by the Nobel committee on the same scale as giving the Nobel Prize to an incumbent American president?)

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  2. 2. coolerbags 4:51 am 07/12/2011

    It is inspiring to know that someone who deserves to be cared for is helping in taking care of others. This is what humanity is about: helping each other out.

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  3. 3. DPWalker 4:24 pm 07/12/2011

    Perhaps the laws have changed, but Dr. Kavorkian was placed behind bars for half a decade for hastening the death of an ALS victim who was extremely frightened of choking on his own saliva. While not wanting to live to incapacity is understandable and, in a way, admirable, there may be unintended consequences—breeching the law, nonpayment of life insurance benefits, etc. Be careful.

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  4. 4. Mary Knudson 4:11 pm 07/13/2011

    To the first commenter, I would say that it is very unlikely that some basic research done now will produce results in time to sway Dudley in deciding how to handle the next debilitating stage of his ALS. Of course any promising avenues of research to treat or cure or prevent this most terrible of diseases should continue.

    To Coolerbags, yes, that is well put. Humanity is indeed helping one another. Thanks for your comment.

    To DPWalker, I think Dudley doesn’t need to be concerned with breeching the law if he is no more on this earth. I am not aware that he plans to have an active partner helping him who would be left to wonder about legal consequences. I have no knowledge of his life insurance benefits, but appreciate your warning about that issue.

    A friend who also is a writer wrote me an e-mail in which she referred to Dudley’s "suicide" and I must say that I don’t really view what he is planning as suicide. I suppose technically it is, but what I see is simply a man who was dealt a terrible fate refusing to allow this hideous disease to slowly overtake his body, trapping him inside. One of the cruel aspects of ALS is that it paralyzes your body so that eventually you can’t speak, swallow, or move, yet your mind is as agile as ever so that you are fully aware of your condition. I would think this would be the most heightened form of claustrophobia a person can feel.

    Surely, those who believe there is a God don’t think God would forbid them to take charge of their life and death a step ahead of suffering such a cruel existence. Those of us who have pet members of our families would not consider allowing a beloved dog or cat or other pet to go through each stage of such a disease, leaving him alive to no longer be able to eat or make a sound or go for a walk or even move a muscle but to possibly choke on his saliva during the night. Well before the most cruel stage of our pet’s illness robbed him of any joy in life and forced him to exist in some combination of terror and utter boredom, we would take him to our vet and hold and pet him and tell him how much we love him while he was put to sleep. This would be considered the humane thing to do for a pet. But society doesn’t allow us to be as humane to our human family members.

    I hope Dudley will feel the support of his friends and family to decide when he thinks the time is right to stand up and shout "No" to the advancing monster intent on taking over his entire body. He will say "No" in the only means available to him.

    Mary

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  5. 5. denysYeo 7:30 pm 07/25/2011

    Thank you for this thoughtful article.

    As someone who lives with stage 4 cancer, it is my view that people with a life threatening illness (LTI) need the space to deal with their condition in their own way and on their own terms. Each person who is aware that they have a shorter than expected life expectancy will manage the situation differently; and it is important that the world around them gives them the message that this is OK – in this domain there is no right or wrong.

    Through articles, such as presented here, we can come to understand how people with a LTI attempt to cope with their condition, but in the end we need to make our own decisions as to how we manage the rest of our life – how ever long that may be.

    upi:dyd-dgyeo

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  6. 6. carol12 8:10 am 09/13/2011

    Hi there, Speaking of death prediction, I find it really odd that one of the on-line death prediction services showed me the same death date that I was foretold in my dream about a year ago. http://yourdeathdate.info/1/index.html – I can’t explain this coincidence in any other way except that there must be some kind of magic involved here.

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  7. 7. Kitchener 8:08 am 10/11/2011

    Your article on Dudley is very welcome in that it highlights in your own words “the most frightening, horrible disease anyone can get”. As someone who was diagnosed with this disease 6 months ago, I won’t argue with you about that. However, everyone’s responsibilities are different. Dudley argues that his responsibilities are to his family, and that he owes everyone a swift, clean exit. Fair enough. However Dudley is in his late 60′s. As far as I can tell he has one adult child. My responsibilities are different. I am in my early 40′s and I have two primary school kids. I have a responsibility to hang on as long as I can. that is how I felt when I was diagnosed, it’s also how I feel now. ALS, or Lou Gehrig’s disease is sort of mathematical: one in two survive two years, one in five survive five years, one in ten survive ten years and so on. Fortunately for me ALS has another signature – it can often be very hard to diagnose and is mimicked by a number of other neurological conditions. Despite being diagnosed by the head of neurology at a major city hospital, the guru may have jumped the gun and I might have something else. So It looks for me now that I have had a stay of execution, but no guarantees. How does that make me feel? Well, I still have to survive and prove the guru wrong. Perhaps as importantly I have to become an advocate for this little known fatal, despicable disease that I may or may not have. Who amongst your readership has ever heard of this dreadful affliction, and what have they done about it? There is almost no progress in the fight against ALS; being a cynic I suspect that is a marketing issue. It can’t be treated, it can’t be cured; it can’t even be diagnosed by a definitive test. It is 100% fatal and debilitating on the way. It destroys people and their families. It makes people want to take their lives because they have no hope. Surely such an affliction needs more attention, and I would exhort your readership to shed a tear then find their wallets to donate to research for this overlooked destroyer of families.

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