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

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