Writing for his life.

Graves, Florence George

`The 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 Fm 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 tee 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."

Dickinson 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. the 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 Westem 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." Its 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 N 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 Irancontra.

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 tics, 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.

Brian AND Barbara Dickenson met in New York in 1990 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 foe, 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 dietation. 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."

`Things coming apart," Dickinson told his journal in early May 1994, about two years after he first sensed something was wrong. By then his voice was rapidly fading. "Family is terribly stressed. Everybody angry much of the time.... God knows taking care of me is hard work. Sometimes uncomfortable, tedious and always done with the sight of me growing weaker.... Futility. Is that what some of us are feeling? That he's going to die before long anyway?"

Jonathan, 26, had one semester of college to complete when he learned about his fathers diagnosis shortly before Christmas in 1992. After graduating the following spring, he came home to help. "I didn't have to think about it too much," he says. "I only have one father, and I have a long life ahead of me to do my own thing."

Jon's fraternal twin, Matthew, returned from Colorado where he had been playing in a rock band. Dickinson's oldest son Andrew, 28, was on the road, driving back to Rhode Island from a job in Baltimore (and a long-term romance that had ended) when he got the word.

As their fathers condition worsened, the three sons and their mother, with the help of a home health aide, took care of Dickinson full time, dividing the day into shifts. Although the sons had voluntarily moved home to help care for their father, there was intense stress for everyone. Andy recalls that he and Jonathan were "about to kill each other." After a year, the twins moved out to reduce the tension created not only by their father's disease but by the new family dynamic -- five adults living together. AD of them carry beepers, however, on call for "Dad Duty."

"Each brings his own special qualities to the job of caring for his ailing father," Dickinson told his readers in a January 1994 column. "This is hardly a role that I would have wished for them -- and certainly not one that they would have wished for themselves.... Their contribution is beyond price."

Because of insurance regulations, the nurses who now care for Dickinson around-the-clock are not allowed to lift him in and out of bed. The Dickinsons' sons have taken on that duty.

To lift his father, Andy says he puts his hands under his dad's armpits, and squeezes his knees between his own. He then locks his knees, tips back, and his father stands up out of his wheelchair. Andy then lays him on the bed. He does the reverse to get him into the wheelchair.

Although Andy says he had not kissed his dad since he was a kid, "I plant a big wet one on his forehead every night." As corny as it sounds, he explains, his fathers illness has given him a chance to learn what is really important. I keep coming back to bumper stickers. Take it easy.' 'One step at a time.' `Shit happens.' They are so true. I don't mean to oversimplify, but you catch yourself saying things like that."

"Sometimes I think, My God, do I ever say anything that is not a chiche?'" says Barbara, a tutor at a private high school in Providence who readily admits to moments of deep despair and anger. Life gives you lemons, make lemonade.' 'Live for the moment.' 'Stop and smell the roses.' But of course these things are cliches because they are so damned true!"

`I am so terribly sorry to all of you, my dear family, for the many stresses that my illness has brought to this house. Fm grateful beyond words for the care and patience you are showing me. Please remember for all time that I love you above all else," Dickinson told his journal in September 1994.

"For us," Barbara Dickinson says, "the important thing is having Brian here with us. We talk to him. He talks to us [via the computer]. He can come out and sit in the kitchen while we are getting dinner on the table. He looks out the window and says, You know the evergreens need to be fed, and you need to cut the wild grape out of that tree.'"

She finds such seemingly mundane moments especially poignant because, two years ago this Memorial Day, Brian almost died. Not long after he had been wheeled out to the yard to help supervise the family's spring ritual of planting annuals between the perennials bursting forth in the flower garden, Dickinson realized he was feeling "decidedly unwell." A nurse was caned, then 911. "A galloping pneumonia,"says Barbara. "He damn near died that night."

Ten days into his four-week hospital stay, the doctors did a tracheotomy and hooked him up to a ventilator, which then became his constant companion and lifeline.

As he improved, the insurance company insisted that because Dickinson was now tied to a machine that breathed for him, he would have to live in a nursing home where he could get highly skilled care. Moreover, the company reserved the right to pick the nursing home@ all of the possibilities were at least an hour away.

Absolutely not, Barbara told them. Brian would live at home and the insurance company would pay them the equivalent of what nursing home care would cost. She would then hire nurses to care for Brian around the clock.

The insurance company, she says, was worried about setting a precedent, but she was worried that Brian would have died out of despair, in a nursing home. Barbara, who hired a sharp attorney, says the disagreement went to the top of the insurance company. She made it clear that if the company insisted on putting Brian in a nursing facility, she would generate widespread publicity that would have made them look like the biggest jerks." She even threatened to have ABC anchor Peter Jennings in her living room that afternoon to talk about the heartless decision.

The Dickinsons say their settlement prohibits them from publicizing the terms of their agreement with the insurance company. However, Brian is at home, and he has 24-hour nursing care. And, Barbara says proudly, he is still working, still making a contribution, still enjoying life.

This is thanks not only to his family, but also to the Eyegaze computer system, installed soon after he came home from the hospital. In one of his columns, Dickinson told his readers how this almost science-fiction system works. A color monitor is mounted on a moveable bracket above my desk, positioned at eye level. A small TV camera, of the sort used in store security systems, is mounted under the monitor and aimed squarely at my right eye. This camera, no larger than a tennis bar can, is the heart of the Eyegaze system. It tracks the movements of my eye as I glance over a simulated computer keyboard screen before me.

"When my eye gazes for more than a half-second at a letter or other character, the camera feeds this information to the computer, and the letter pops onto the screen. When he was well, Dickinson could usually write his 800-word column in about three hours. Using the Eyegaze system, it takes 110 to 12 hours, "longer if I'm tired or subject is complex."

The computer allows him to save, retrieve and edit copy. It also has a voice synthesizer. At the blink of his eye, he can instruct the computer to "say" anything he has written. He has connected it to another computer that allows him access to the Internet and CD-ROM offerings. He communicates with his editor through a modem. And when he wants to goof off, he can call up games such as chess, paddle ball and a version of solitaire that will not tolerate any form of cheating."

Because his oxygen supply and portable ventilator are cumbersome, Dickinson must stay home more than he used to. But I'm surely not ready to be labeled a shut-in. Not me. Not yet," he wrote in a September 1995 column, about one month after he came home from the hospital.

"Yes, my world has quite obviously shrunk -- but this is only the conventional perspective applied to a person in my situation, and a rather dreary perspective, at that. It suggests pity: Poor Dickinson; he can't climb the Eiger la Swiss Alp] any more.

"This view of things is confining, narrowminded and condescending. I much prefer to believe that my circumstance has allowed me to regard my world in greater detail than before. I notice small things -- the way afternoon sunlight filters through the leaves of the dogwood near our back porch, for example, or the heartiness in a sons voice when he greets me in the morning.

"As with a camera, my narrowed focus, while it cuts out large swaths of a scene, gives a brightness and clarity to the smaller field of view that I take in."

Of course, "many is the time over the past couple of years when I would have made all kinds of bargains with the devil if I could once more walk across a room, or embrace my wife, or turn the pages of a book, or eat real food. But I don't dwell on such wishful thinking.... Such musing, beyond being futile and depressing, would erode what positive feelings that I have left.,

To celebrate his 59th birthday last September, the family rented a specially equipped van and drove to Beavertail, a point on the island of Jamestown, so that he could enjoy the fresh air, a brisk wind and a frisky surf. That evening Barbara, known for her gourmet cooking, served the family and guests a birthday dinner of wild mushroom soup, roasted garlic chicken with mashed potatoes and gravy, pureed spinach and chocolate souffle with whipped cream.

Although Brian, a long-time connoisseur of fine food and wine, can no longer eat regular food, he can still taste, so Barbara puts morsels on his tongue for him to savor. He enjoys the aroma and taste of champagne or brandy, which she sometimes squirts on his tongue. (Every night Brian also enjoys a relaxing glass of red wine through his feeding tube. I

The day before his birthday, Dickinson is working diligently at the computer in his makeshift office in the family's living room. It is only a few feet from the homes spectacular first-floor library, which became his bedroom after he went on the ventilator. From his hospital-type bed, he can see his large-screen television and enjoy the cozy fireplace. He can watch the birds and the changing seasons from the wall of windows that face the homes swimming pool and backyard, where Dickinson has spent many hours with his family, cultivating the gardens.

"Hello," a mechanical voice bellows to me. "Make yourself comfortable. Would you like coffee? Tea?" With a blink of his eye, Dickinson has told his computer to say, what he has just written.

As Dickinson silently stares at his computer screen, his nurse, Deborab Graves, explains how she must occasionally push Brians eyeglasses back, wipe the saliva that accumulates around his mouth, or adjust his immobile arms. Its easy to forget that even though he can't turn Ids head to acknowledge visitors or utter a sound on his own, he is taking everything in. As we discuss the curious looking metal halo that holds his limp head in place, words suddenly appear on the screen. "looks like electric chair...," Dickinson writes of his head brace. Gales of laughter fin the room. His eyes twinkle with amusement.

"I must explain my computer situation," he continues more soberly, one eye blink at a time, one letter at a time, the words soundlessly emerging on the screen. The list of questions I had faxed to him several weeks earlier was taped to the computer. "It's a mess because my hard drive died two weeks ago, and with it went two years of writing. I had no backup. On that disc were long answers to one page of your questions. I have not had time to redo them."

When the hard disc on the computer he had come to know as a trusted friend overheated and warped, almost all of Dickinson's writing during the past two years, including his columns, poetry, journal and draft chapters of a memoir-in-progress, were destroyed. l forgot Rule No. 1 in the computer survival guide: Always make back-up copies. I had copied nothing," he told readers as he described, without a trace of pity, another cruel, incredible setback. His columns could be recovered, but not most of the priceless journal.

How does he keep on going?

Slowly, silently, his answer appears on the computer screen. How do I keep on? Well, this is some kind of ultimate challenge.... Thankfully, there is no pain. I can still do my thing, which is writing; this has kept me more or less sane. I am an observer, and I can observe as well now as ever ... perhaps ... because I have so few distractions, I have plenty of time to muse or reflect....

"I have been surprised by all the public interest in columns about my illness. At first, I was reluctant to write on so personal a topic. I supposed that readers would be turned off, or that they'd think I was taking advantage of my position as a columnist. But it hasn't turned out that way. Readers seem fascinated -- dare I say inspired -- by the story of how my family and I are coping with my illness.

"There's a universal element in this.... I think readers are also intrigued that I keep plugging away at my job, despite my disability, actually, I'm lucky, because the writing allows me an escape from my confinement."

Dickinson has been answering questions all morning, and his eyes are tired. He suggests a break just as his wife Barbara, who says she has maintained her equilibrium thanks not only to her supportive sons but also to a wonderful psychiatrist, returns home from work. She has a copy of the days Providence Journal-Bulletin, which has an article about another Rhode Island man afflicted with ALS. Noel David Earley had announced that he had chosen a date (later postponed) to take his own life before the disease completely immobilized him and his voice.

Earley, who died about four months later from complications caused by the disease, had become a cause celebre for the right-to-die movement, devoting his final days to helping the American Civil Liberties Union challenge a Rhode Island law that makes it a crime to help someone commit suicide.

"The difference is that what was important to Earley was having control over his dying," says Barbara. "And what has been important to Brian is that he have control over his living."

But she would never criticize the position taken by Earley, who was divorced and had no children. We just happen to be fortunate that the kids ... could help ... and they wanted to."

"And we were lucky enough to have some money, "says Barbara, to pay for steep out-of-pocket expenses such as physical therapy and a fully loaded wheelchair.

Although Dickinson is still focused on living, Barbara believes he approves of assisted suicide, "as long as all the usual Precautions have been met." Brian, who takes an antidepressant every day, has been told that if he decides he has had enough, he can be weaned comfortably from the ventilator, using morphine.... And the assumption is that he would go into respiratory failure, but very comfortably,, Barbara explains.

But for now, life still holds meaning. In a column last summer, Dickinson wrote, When I awake each morning, I feel that I have received a gift, a sort of bonus. It is as though I have been granted extra days in the here-and-now, in the way airlines bestow frequent-flyer miles."

It seems there is always something to look forward to, some reason to keep on living. During the Christmas holidays, Barbara packed the family van and took Brian to Boston to enjoy "The Nutcracker, and Handers "Messiah." Four days after Christmas, some 30 friends dropped by to help celebrate their 35th wedding anniversary. ("Don't spin chocolate mousse on my cravat," Brian joked to Barbara that evening.)

And then there is his work and those "bumper sticker" truths, as his son Andy calls them, that the "dreadful beast, has painfully taught him, and that he in turn wants to share with his readers. Like the fact that great good can often come from bad.

Next July Brian win experience this one firsthand. He will get dressed up, and the specially equipped van will take him to Andy's wedding. The son who always remembers to plant a kiss on his fathers forehead at night is marrying Ruth Ginger, a registered nurse. They met almost two years ago when Ruth accompanied Brian in the ambulance that brought him home from the hospital after his bout with pneumonia.

Brian says that every day, "the beast" shows him that life is precious, fragile and a gift not to be spent recklessly." In a column late last year, he told readers, "I still enjoy life surprising as this may be to some. The world has so much beauty. I long to drink in all of it that I can. I have unfinished writing projects before me. There are friends to see, music to hear, old movies to watch.... I want to see our three sons launch their own families and careers."

Besides, "my family and I agreed when this craziness began that we were in this fight together; I'm not about to let them down.

"Is mine a strange life these days?" he asked his readers rhetolically.

"Perhaps, in the eyes of some. But it's not a bad life, even so."

Florence George Graves, the founding editor of Common Cause Magazine, is a resident scholar at Brandeis University.