Living with Lou: A writer embraces his terminal disease

Lou Gehrig's disease has attacked his voice, but Dudley Clendinen still has a story to tell

  • “We either own our issues or they own us,” Dudley Clendinen says. “One way to own them is to talk about them. And I love conversation.”
“We either own our issues or they own us,” Dudley… (Jed Kirschbaum, Baltimore…)
April 20, 2011|Susan Reimer

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."

Baltimore Sun Articles
Please note the green-lined linked article text has been applied commercially without any involvement from our newsroom editors, reporters or any other editorial staff.