Writing for His Life   

Ravaged by Lou Gehrig's disease, Brian Dickinson can't walk, talk, move his arms or fingers or even hold his head up. But thanks to an eye-activated computer, he keeps filing his columns for the Providence Journal-Bulletin--and he's doing some of the best writing of his life.

"T HE LAST FEW WEEKS FOR ME have been marked by a...kind of mental tussle between the idea of carrying on the fight and keeping up hope and some real unhappiness at the physical limitations I am experiencing.... My hands and arms have lost most of their strength. I cannot dress myself, wash myself, feed myself, shave myself, and I even have trouble turning the pages of books and magazines.... It is devastating," Brian Dickinson, a columnist for the Providence, Rhode Island, Journal-Bulletin, told his journal on December 4, 1993.

It was one year after a neurologist had confirmed that he had amyotrophic lateral sclerosis (ALS), a progressive, fatal neuromuscular disease, and Dickinson was speaking into his tape recorder because he could no longer hold a pen or type.

ALS, often called Lou Gehrig's disease after its most famous victim, the Yankees baseball player who died in 1941, strikes about 5,000 Americans a year, gradually destroying all of their voluntary muscles, leaving them paralyzed. Doctors don't know what causes it or how to cure it. Most victims die within two to five years.

On this day Dickinson's voice was halting, hoarse, gravelly, as if he were getting over laryngitis. But he was clearly desperate to hang on to his voice, however imperfect. Any day now, he told his journal, he would be getting an ingenious computer program that would enable him to continue writing his column. After hearing his voice, the computer would transcribe his words onto a screen. But it would work only if the machine could understand him.

"I spoke to my sister Toby on the phone last night, and she claimed that I didn't sound particularly different," he continued in his journal. "I, however, feel that I do sound different," he said, struggling to enunciate each word, drawing out each syllable in a way he later said reminded him of Alfred Hitchcock announcing one of his 1950s television shows--"Goooood Eve-en-ing...."

"It's a drag, not only for the present, but for what it may foretell about the future."

More than three years now have passed since he recorded these thoughts, and Brian Dickinson's muscles have almost completely atrophied. He is unable to utter a sound. He can't move his arms or his fingers. He can't walk. He can't hold his head up. He can't even breathe for long without the help of a ventilator. He gets his nourishment from a feeding tube, and relieves himself at will in what his wife, Barbara, says is called a "Texas catheter," a condom attached to a tube so that the urine can flow into a retention bag. When he wants to get out of bed in the morning, his nurse calls one of his three strapping sons to come home to lift him into his wheelchair.

"I never know whether to consider myself seriously ill or gravely ill...but I know that I am at least 'serious' and, ALS being the 'dreadful beast' that it is, will almost certainly turn to grave in due course. Instead of gnashing over such quibbles, however, I'll just reflect that I'm alive and mighty glad to be so," Dickinson told his journal in July 1994.

As the disease progressed, Dickinson, now 59, considered his options and decided to look on the bright side. He can see, hear, taste, feel and think with absolute clarity. He has no acute physical pain. And even though he can't move his legs, those who know him well will tell you that Brian Dickinson is not just alive, he's also kicking.

Almost every day, Dickinson, who has worked for the Journal-Bulletin since 1964 as a reporter, editorial writer, editorial page editor and political columnist, reports for work. He sits in his wheelchair at his state-of-the-art computer set up in his family's living room, writing eight to 10 hours a day, producing one, sometimes two columns a week for the paper, while also working on a memoir. His editor and publisher believe he now is doing some of his best work, movingly connecting with readers, one of whom described him as "the bravest man I know."

D ICKINSON WRITES LITERALLY one eye blink at a time, one letter at a time, using a computer system called Eyegaze. He turned to this piece of equipment, developed by LC Technologies, Inc., a small company in Fairfax, Virginia, when he was no longer able to move any of his voluntary muscles except those in his eyes and a few around his mouth (which enable him to form a slight smile that can be discerned most clearly after he has cracked a joke on the computer screen).

Without the $20,000 computer system, Dickinson would not be able to communicate much more than a yes or no. (He does this by almost imperceptibly raising his eyes up to indicate "yes" and by moving them back and forth to indicate "no.") Writing his column would have been out of the question. Instead, week after week, he writes on a range of topics, from voter apathy about foreign affairs, to Martha Stewart (who "has the talent perhaps unsurpassed in the Western Hemisphere for transforming frivolities into seeming essentials"), to the crisis in the American health care system, a subject he has learned about firsthand.

Dickinson's struggle with Lou Gehrig's disease gives new meaning to the phrases "working journalist" and "family values." It's not only a story about a spirit that refuses to give up but also a story about a rapidly evolving technology that has made the recently impossible, possible.

"I could not overstate how important it has been that I could continue to write through all this," he explained in response to questions faxed to him so that he could answer them at his own pace. "The writing has given me focus, purpose, a precious sense of involvement, of being connected to the greater world.

"I don't deny that I have had gloomy moments," Dickinson says. And yes, many times he has wondered, "Why me?"

"Faced with the cold reality of this awful illness, what was I to do? I could turn toward the wall, steep myself in self-pity and thus compound the misery of my situation, being unable to improve my predicament in the slightest. Or (since the first approach was too miserable to imagine), I could take a deep breath, and with the loyal support of my family, resolve to make the best of a cruel situation, trying to gain some benefit from what time remained to me."

Since he has been sick, Dickinson has gained a new appreciation for the dailiness of life. "I have found new value in friendships, new joy in close family ties, new delight in the scent of a newly planed pineboard, new cheer upon hearing the voice of an old friend on the telephone," he observed in an October 1994 column.

"There is new freedom to ignore the flood of commercial noise that swirls around us every day, new puzzlement at the subtle turning of leaves on the big hickory, new wonder at the genius of Mozart. These are valued perspectives all. I'm lucky they came my way." What keeps Brian Dickinson going when so many others might be calling Jack Kevorkian? "The same quality that has made Brian such a good journalist," Barbara Dickinson, his wife of 35 years, says wryly. "I think he just wants to see how all of this is going to turn out. He's got to follow the story."

During his more than 30 years as a journalist, Dickinson has covered the world. He's been to China, South America, Africa, all over Europe. Perhaps best known for his political commentaries, over the years he has usually taken the liberal point of view, writing earnestly about world crises as well as domestic ones such as Watergate and Iran-contra.

Although he continues to write about current events, he says that, because research is so time-consuming now, he increasingly focuses "on family tales and philosophical musings." He only occasionally tells readers about his life with "the beast." He has worried they might find him too self-indulgent. But to his surprise, when he does, reader response has been "amazement and support."

As one admirer wrote, "You have given your readers a great gift: a reminder about what is truly important in life."

He began to realize "that I could help people by keeping in the fight.... In a sense, I found myself on stage and couldn't let my audience down by caving in."

Dickinson believes that since he's been sick he has become a better writer. "I almost literally have nothing else to do." He now feels "free to write on any topic, to experiment with various stylistic devices, to indulge in personal views on personal subjects," he says. "I think my writing is now more reflective than before. Illness encourages the long view. I am much less interested in the daily whirl of politics, for example, and more on timeless questions about life, about coping with adversity, about the universals of the human condition."

In 1995 the American Society of Newspaper Editors gave him its Distinguished Writing Award for commentaries described by his editors as "monuments to extraordinary personal courage and will," "moving but never maudlin, windows on a private world of suffering, of gentle understanding, and even joy," and "worthy lessons on how to die. More importantly on life, and how to live."

The Providence Journal-Bulletin has not only paid thousands of dollars for Dickinson's computer equipment, but also continues to pay him his full time salary and benefits. Publisher Steve Hamblett says it's not only "the right thing to do," it's also the right thing to do for the readers. Dickinson, he says, is "a very wonderful human being" who is powerfully connecting with readers while "writing some of his best stuff."

Hamblett and Robert Whitcomb, Dickinson's editor at the paper, stress that Dickinson has not had a Saul-on-the-road-to-Damascus conversion. He is, they say, fundamentally the same person he was when he was well. They aren't at all surprised that he has handled his illness with grace.

Whitcomb believes that Dickinson "embraced or accepted or tolerated his situation because he saw it as an opportunity to give the world a different perspective, and luckily technology has allowed that. Technology is a hero too."

But it would be a mistake to give all of the credit to the wonders of technology or even to the remarkable spirit of Brian Dickinson. "Have you met Barbara yet?" asks Whitcomb.

B RIAN AND BARBARA DICKINSON MET in New York in 1960 after he graduated from Harvard and she from Smith. He was a news clerk at the New York Times' Week in Review section. She was an assistant beauty editor at Mademoiselle. Fourteen months later they were married. After a stint in the military, he tried a year of law school. That convinced him he really wanted to be a journalist, Barbara says, and the Providence Journal-Bulletin hired him as a reporter in 1964.

Over the years, most people probably thought that Barbara Dickinson, a striking woman, had it all. A rewarding job as a tutor. A devoted husband ("a more valued companion, in good times and bad, no man could ask for" Brian has written of Barbara), three grown sons, a beautiful home, family vacations skiing in Canada, sailing in the Caribbean and touring Europe.

But now she has something else. Something of value, but something she says she never would have sought: the kind of confidence that comes from taking on "the beast" and the challenges ALS brought to their family, including a "battle royal" with Brian's insurance company, which wanted to put him in a nursing home.

Barbara remembers it was five years ago this May that Brian started complaining about tingling in his right leg. Then he said it was getting harder for him to dodge cars when jaywalking across the street to his office at the paper. The doctor guessed it was just a case of the sciatic nerve in his leg acting up. Another doctor agreed. More tingling. A CAT scan ruled out brain tumors. An X-ray of the spine looked normal.

But then Brian started falling down, complaining more, Barbara says. He had trouble lifting his right arm. Finally, a neurosurgeon suggested ALS. Dickinson got a second opinion on December 2, 1992. The doctor was "extremely direct and brutal about the diagnosis," Barbara says. "He looked at Brian and said, 'Well, you have Lou Gehrig's disease, and there's not a damn thing you can do about it.' " He told Barbara, 'Just get him dressed and you ought to go out to dinner.' That was it--that was his total communication," she says.

Dickinson continued to go into his office at the Journal-Bulletin that winter. He drove himself from his home in nearby Warwick as long as he could. Then Barbara started driving him; soon his three sons began taking turns too. He started using a cane, then two canes, a four-pronged cane and finally a walker.

"And in between," Barbara remembers, "he fell down a lot."

Brian fell on Memorial Day in 1993, and knocked out his two front teeth. He fell in front of his office and had to have stitches in his lip. He fell at home in the bathroom and then in the kitchen, both times sustaining serious injuries.

There were several frantic calls to 911. "I think we had four trips to the hospital in an ambulance," says Barbara. "And so in one terrible way, we were relieved when he went into a wheelchair because the falling had stopped."

As the muscles in his legs gave way, so too did the muscles in his arms and hands. About one year after doctors diagnosed his disease, Dickinson could no longer write with a pen or type. Gradually his voice gave way. But he continued writing his column, using a series of special high-tech communications systems.

While he could still speak, he used a computer system called Dragon Dictate, which he programmed word-by-word to recognize his dictation. But writing was a painstaking process. "Slowly, we proceeded from glacial speed to the speed of a bone-tired mule," he told his readers. After four months his speech became so slurred that the Dragon could no longer understand him.

But he could still move one finger, so he turned to a specially designed hardware and software system called ShareKey, developed by the Share Foundation at the University of Massachusetts-Dartmouth. He was able to operate his computer with "a slight wiggle" of his good finger. "This was hardly a speedy method," Dickinson wrote, "but like the Model T Ford, it did the job."

Soon the finger was limp. But he could still move his head from side to side, and so his "resourceful sons" made "a sturdy bracket from steel tubing and duct tape to position a switch near my left ear. A slight twist of my head and--presto!--the little switch clicks and another letter appears on the screen," he told his readers.

"In truth it is probably the least efficient means of recording words since Babylonian scribes dug their pointed sticks into clay tablets.

"Even on a good day I can write no more than two or three lines an hour. I seem to have been working on this particular column since the Coolidge administration."