Writer Dudley Clendinen is a gifted raconteur, weaving his stories in a soft Southern accent and with a courtly manner. It is easy to imagine him captivating dinner guests until long after the candles have burned down.
It is a savage irony, then, that amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease, is taking his voice first when it might have chosen his limbs instead.
It was slurred speech that gave Clendinen, 66, the first hint of trouble. A former national reporter and editorial writer for The New York Times who also worked for The Baltimore Sun, he had settled here to write books and teach.
But he is also a recovering alcoholic who has been sober for 22 years, and he was sounding … well, drunk.
That was a year ago in May. It would take until November for doctors to confirm his suspicions. ALS, the progressive, devastating neuromuscular disease for which there is no known cause and no treatment, had struck his tongue, his vocal cords and his diaphragm.
It is harder and harder for him to force the air up from his chest and over his vocal cords, and harder still for his tongue to form the words. He was told he might live from one to three years longer.
"This disease has no treatment and no cure. But it has a calendar," Clendinen says.
Life now is less cluttered and more intense for Clendinen. He quickly focused on what he calls his "loving responsibility" to make this easier on those who care about him, including his 30-year-old daughter, Whitney, a graduate student in Washington.
"We either own our issues or they own us," he says, sitting in the sunlit library of his apartment near the Johns Hopkins University campus. "One way to own them is to talk about them. And I love conversation."
He named the disease "Lou" because he wanted to "defang it," he says, and he talks about it as if it were a friend sitting next to him at dinner. He is grateful that the disease was named for a great baseball player and a great man because, he says, "people think more kindly of those of us who have it."
Though there is some weakness in his right hand, Clendinen can still type and he has sent dozens of letters to the many friends he has accumulated during his journalism career.
If you know Clendinen, you can imagine how witty and warm those letters must be. But this is a formidable task — making everybody else feel better about what is happening to him.
"When you have a friend who is doomed, it casts a pall on the meeting," he says, with characteristic understatement. "I didn't want my friends to walk across the street, metaphorically, when they see me. So I have been writing long and entertaining, I hope, letters."
Tom Hall is one of those friends. The director of Baltimore's Choral Arts Society and a host on WYPR's "Maryland Morning," he and Clendinen have known each other for 20 years. It was Hall who asked Clendinen to tell his story on the radio.
"His reaction was extraordinary, right from the very top of this," Hall says. "He was going to take this on as a journalistic project. He would do what he does so well, which is construct a narrative. Only in this case, he was the subject."
To understand Hall's suggestion that Clendinen use what is left of his voice to record a dozen or so installments for WYPR, you have to understand how perfectly this fits Clendinen. It is a way to use his journalist's skills and his writer's gifts to interpret this experience for others.
The conversations with Hall, which air every other Monday, are called "Living with Lou: Dudley Clendinen on a good, short life."
Clendinen was no sooner diagnosed than he had the idea for a book about the disease and for a series of lectures on dying. He also had the idea for a novel about guns and the NRA, if you can imagine. But he knows from experience that writing is a consuming process, and he has no wish to use up time in such a selfish endeavor.
"The discovery I made at the same time I was having these ideas is that I have a growing list of visions, rosy visions, which includes taking my daughter Whitney on trips, and in contrast to the list of rosy visions, I actually have a diminishing store of energy," Clendinen tells Hall in one of their radio talks.
Nonetheless, he has traveled to Santa Fe, N.M., and Istanbul, Turkey, since the diagnosis, and he has more invitations than he can accept.
"It is remarkable how desirable you become when you are diagnosed with a terminal disease," he says, 20 pounds lighter but looking elegant with his shock of white hair and dressed all in black.
With no treatments or therapies available to him, Clendinen says he has a freedom cancer patients do not, and he is using his time, in part, to celebrate with the friends who will no doubt be at his funeral — one party he is sorely disappointed to miss.
"I have wonderful friends, and the conversation is always good. I expect it to be a great party."
Clendinen considers himself to be fully "shrunk" after years of therapy to battle alcoholism and to survive the breakup of his family over the revelation that he is gay. And the tools he learned in that journey of introspection are handy when you are presented with a death sentence, he says.
"I have these wonderfully cross-figured Southern genes," he says to Hall. "I am gay. I am an alcoholic. I am an Episcopalian." He considers himself lucky for the "range and variety of my dysfunctionality."
And there is something remarkably freeing, he says, in knowing that you have only a year or three to live. He doesn't worry about his bills or his cholesterol.
But he does worry about his daughter. He spends as much time as he can with Whitney while working to weave a safety net for her, making connections and lines of support with friends and family who will be there for her when he is not.
"I have loved being part of the conversation while she figures out life. I will hate to have to leave that off," he says.
Of all the freedoms hard won with this disease, Clendinen feels no urge to drink again, even though no one would blame him if he did.
"I have thought about it," he concedes. "I certainly can justify a martini. Who is going to get mad at me now?"
But he knows enough to know that one drink would lead to another drink, and he would end up a "sodden heap." There is no good reason to live as a drunk, and less good reason to die one.
Clendinen's most recent book is "A Place Called Canterbury: Tales of the New Old Age in America," a loving portrait of his mother and her friends in a retirement home in Florida and of her slow — and silent — progress toward death after a series of strokes.
"I have spent a lot of time in the last 20 years being responsible for the older members of my family: my mother and my aunts and an older cousin who wanted to take her life. I have been around old age and decline and the choices people have. I have learned a lot from that experience.
"It is important to live and die on your own terms, in a way that is responsible to the people who love you," he says.
Clendinen has no wish to stay around, he says, to see how this turns out. He does not want tubes that breathe for him or feed him. In fact, he says, he has no wish to stay around past the time when he can host a dinner. His daughter and his friends and his physicians are aware of this.
"He is not sure if or when or how he might take his own life, but he feels that option should be treated with the same respect as any other [medical] option," says his friend, Hall. The radio interviews in which Clendinen discusses his future should air in late May.
"I don't believe in heaven, and I don't believe in the Christian or the Hindu or the Buddhist or the Jewish or the Muslim god," Clendinen says.
"I think of God as a kind of mythical explanation for the power that is evident — but that we can't describe — in the gorgeous complexity of this world. I am one of those people who doesn't think you can get all this out of a black hole."
And the end of the day, he says, "I believe in the power of collective love. And the collective power of our better angels, our better selves."
Amyotrophic lateral sclerosis (ALS)
Often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
The progressive degeneration of the motor neurons eventually leads to their death and the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, and difficulties with speech, swallowing or breathing.
The heart and the digestive system are also made of muscle but their movements are not under voluntary control. Therefore, the heart and digestive system are not involved in ALS. However, because breathing is both voluntary and involuntary, ALS may eventually have an impact on breathing.
The cause of ALS is not completely understood, and while there is not a cure or treatment that halts or reverses ALS, there is one FDA-approved drug, riluzole, that modestly slows the progression.
There are also significant devices and therapies that can manage the symptoms of ALS and help people maintain as much independence as possible and prolong survival.
ALS is a quite variable disease; no two people will have the same journey or experiences. There are medically documented cases of people in whom ALS "burns out" — stops progressing or progresses at a very slow rate.
Information courtesy of The ALS Association.
Dudley Clendinen
Birthplace: Tampa, Fla., Aug. 17, 1944
Education: Vanderbilt University, bachelor's in American history, 1968. Served in Army National Guard.
Personal: Divorced. Daughter, Whitney, born 1980.
Career: Reporter for St. Petersburg Times (1968-1979) and The New York Times (1980-1987). Editor at Atlanta Journal & Constitution (1987-1988) and The Baltimore Sun (1990-1991). Editorial writer at The New York Times (1998-2000).
Johns Hopkins Masters in Writing Program and University of Baltimore MFA program, 2008-2010.
Writings: His books include "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."
He is editor of a book of essays, "The Prevailing South," and author of the text for a book of photographs, "Homeless in America."