Ride For Life: Columnist Brian Dickinson Dies from ALS

Brian Dickinson, a Providence Journal editorial writer who stirred thousands of readers with his masterful, elegant columns long after Lou Gehrig's disease left him with the control only of his eyes, died early yesterday morning at home.

Mr. Dickinson was 64. He was under hospice care and his family was in the house at the time of his death.

For nearly a decade, helped by a series of remarkable computer devices, an array of medical machines and the constant attention of his family, Mr. Dickinson worked at his writing daily, even though he could neither speak nor move his arms, hands or fingers.

"Brian's story is one of creativity coupled with epic endurance," said Robert B. Whitcomb, vice president and editorial page editor of The Journal, and Mr. Dickinson's editor until the columnist retired, late last year. "Totally paralyzed, except for his eyes, he managed to put out a body of commentary whose eloquence, emotional precision and even humor drew international attention. His continued engagement with the world in the face of his devastating malady was a lesson in heroism."

"Apart from his obvious courage and incredible sense of humor under the most trying circumstances, in all the years I worked with Brian I was most impressed with his solid commitment to quality and balance on the Journal's editorial and commentary pages," said Stephen Hamblett, publisher of The Journal from 1987 to 1999.

"While he recognized the Journal's obligation to take forceful editorial positions, he was always careful to be sure that other opinions were given comparable space. In this regard, Brian's innate sense of fairness came through, particularly appreciated, I feel, in an era of too much 'in your face' journalism."

Mr. Dickinson's last column, exploring the implications of America's response to the terrorist attacks of Sept. 11, was published Oct. 3. Like all of his work, Mr. Dickinson's last Journal piece was intelligent, informed, and eminently readable.

But it was what Mr. Dickinson wrote about his struggle with the relentlessly disabling and inevitably fatal amyotrophic lateral sclerosis (ALS), that most moved thousands of his fans, including former President Bill Clinton.

Bluntly honest, the columns kept readers up to date on his extraordinary feat of living long beyond the normal five-year course of the disease. They also brimmed with enthusiasm and wonder about the life that he, his wife, Barbara Dickinson, and their three children had salvaged.

"I neither move nor speak," Mr. Dickinson told his readers in July, 1998. "My feet are strapped securely to the wheelchair leg supports; my hands and forearms rest on a pillow. Except for the fact that I can still manage a smile and still have full control of my eye muscles, I could almost be taken for some outlandish display in Madame Tussaud's wax museum."

Still, one of his most moving pieces advised his readers to embrace and savor every morsel of life, never forgetting to "feed the birds."

"Forgive. Smile. Walk (Oh, do walk when you can)," wrote the columnist. "And, since you can never do it all, savor the small moments that, aggregated, become great." (The column appears on the facing page.)

Mr. Dickinson described in idyllic terms the suburban life he led after the disease was first diagnosed in late 1992, forcing him first to use a cane, then two canes, a walker and finally a wheelchair.

He welcomed his first grandson, Jacob Dickinson, into the world in a 1998 column that predicted the boy would grow up in a brand-new century "rich with possibilities, all yours to explore."

How could anyone have such an upbeat view while being kept prisoner in his body? Mr. Dickinson answered that question several times, explaining in one column that fighting a cruel disease was a motive to live.

"Combat against ALS is its own reward," he said. "The disease now defines the terms of my existence. If I were to cave in too easily, I would be violating the terms of an implicit contract that I had with someone."

That Mr. Dickinson was able to survive was a miracle of modern technology as well as of indomitable spirit.

In his final years, after he had lost most voluntary functions, he used a system in which a small TV camera tracked the movements of his eyes, reconfiguring them through a computer into letters, then into words and sentences.

This method of writing was laborious, sometimes taking 10 hours or more to write 700 or 800 words, which his computer then would spirit to the newspaper in Providence, 11 miles from his home in Warwick.

The impact of these words was widespread. In 1995, his work received a Distinguished Writing Award from the American Society of Newspaper Editors at a ceremony in Dallas, Texas that was attended by his wife and by President Clinton.

Holding Barbara Dickinson's hands, Mr. Clinton told her that he had read a Providence Journal account of Mr. Dickinson's struggle and had been stirred. He gave her a letter and tape-recorded comments for her husband.

Mr. Dickinson's work was nominated by The Providence Journal for journalism's greatest honor, the Pulitzer Prize, in 1995.

The ABC television magazine-format program, 20/20, did a story about Mr. Dickinson in 1997 that disclosed the profound effect he had on others, including those who suffered the same disease.

Many honors were bestowed on Mr. Dickinson.

In 1999, he was presented an honorary degree during graduation ceremonies at Brown University, and in his wheelchair, he shared the stage with retired U.S. senator and astronaut John Glenn, filmmaker Steven Spielberg and Queen Noor of Jordan. That same year he was also inducted into the Rhode Island Heritage Hall of Fame, along with Providence Mayor Vincent A. Cianci Jr. and yachtsman and Bristol town official Halsey C. Herreshoff.

He was born Brian Ward Dickinson on Sept. 28, 1937 in Chicago, the son of Leon T. and Margaret (Stewart) Dickinson.

He graduated from Harvard College in 1959, and he earned a master's degree in political science from Brown University. He also had studied at Georgetown University, American University, Princeton University and the University of Rhode Island.

During a three-year stint in the Army, assigned to the public information office in the military district of Washington, he was cited with an Army Commendation Medal.

While still at Harvard, Mr. Dickinson had worked as an assistant to the cartoonist Walt Kelly, and afterward, he was a researcher at Newsweek magazine and served as a news assistant in the New York and Washington offices of The New York Times.

The Providence Journal hired Mr. Dickinson as a reporter in 1964. He worked in the East Providence and Warwick news bureaus, and served as the manager of the Cranston office. Later, he headed the newspaper's urban team in Providence, and then he covered state government.

Mr. Dickinson joined the newspaper's editorial staff in 1972, and was named chief editorial writer in late 1976. Five years after that, he was promoted to the department's top position: editorial page editor.

In later years, Mr. Dickinson turned over those duties to others and began writing a public affairs column on subjects ranging from foreign policy to national and state politics.

Mr. Dickinson's first inkling that ALS had struck came about a decade ago, when he noticed that he was having difficulty walking. But he and his wife chalked that up to possible side effects of an automobile accident in 1991. Later, he noticed tremors in his legs, arms and shoulders; then one day he could not lift his right leg. In December 1992, a neurologist announced that he had ALS, and said that the disease was unstoppable.

Nicknamed for the illness that killed Lou Gehrig, a star baseball player for the New York Yankees who died in 1941, ALS attacks nerves that make voluntary muscles work. Often it is fatal within just five years.

Brian and Barbara Dickinson and their children turned out to be ferocious fighters.

Brian insisted on working in his office, even though the disease progressively made his body weaker and weaker. More than once, he fell, injuring himself. Finally, confined to a wheelchair, he wrote from home.

Every time that he seemed to adjust to the advancing disease, it got worse, requiring a new response. When ALS had sapped the strength of his fingers and hands, Mr. Dickinson dictated his stories into a computer that converted sounds to the written word. When his voice failed, he shifted to a computer that would allow him to control a blinking cursor, and select from a 5,000-word glossary, with the one finger that still worked.

Predictably, that finger gave out, too, so Mr. Dickinson moved to the next piece of equipment, the video system that trained a TV camera on his eye, and allowed him to select one letter at a time.

Mr. Dickinson grew adept with this system, whose $20,000 cost was paid for by the newspaper. The computer also allowed him to "speak" to visitors, translating what he had written though a voice synthesizer.

Throughout the years, his entire family sustained Mr. Dickinson. Fraternal twins, Jonathan and Matthew, and their brother, Andrew, were in their 20s when the illness worsened. They returned to Rhode Island to help with their father's care.

For part of each day, one of the sons would be assigned to "Dad Duty" everything from helping their father with his personal care, to trouble-shooting his computer and to driving him to an ocean beach.

For Andrew, these chores had an unusually happy offshoot, which Mr. Dickinson described in one of his columns written to his grandson Jacob.

"In late June 1995, I was ending a one-month stay in Rhode Island Hospital in Providence, where the docs cured a nasty pneumonia and installed a tube in my windpipe to help me breathe.

"The hospital assigned a lovely nurse named Ruth Gingell to accompany me on my ambulance ride home. When we arrived at the house, Andy and Ruth met, and well, you know the story from there. It was, as I'm sure you'll agree, the happiest of coincidences."

Mr. Dickinson is survived by his wife, his sons, two grandchildren, his father and stepmother-in-law, two sisters and three daughters-in-law.

A private family funeral service will be held today. A public memorial service will be scheduled soon.

In lieu of flowers, the family asked that donations be made to the Brian Dickinson Courage Fund at the ALS Association of Rhode Island, 2845 Post Road, Suite 110, Warwick, RI 02886.

The fund supports research efforts for a cure for ALS and provides assistance for patients and their families.

Take a deep breath, feed the birds

This is one of Brian Dickinson's most cherished columns, written in 1994 while suffering from amyotrophic lateral sclerosis.

TIME TO TAKE a deep breath - a deep breath, then pause. There. Feel better already, don't you? Close your eyes. Tight. Count to 10. Slowly. Afterwards eyes still closed, mind you think of a particularly upbeat something that you did this year. Call up an image of this episode. Why is it memorable? How long will you remember? You say 1994 wasn't an especially upbeat year for you? That happens. No problem. Go back two, three years more if you need to until you come upon an image that makes you smile. The important thing is to stay in the game.

When in doubt, feed the birds.

Write a letter. The exercise will benefit your immortal soul and absolutely floor the recipient, who probably hasn't received a letter from anyone since Earl Butz was secretary of agriculture. Teach yourself to tie a few good knots. While you're at it, knit up the raveled sleeve of care. Allow 10 minutes extra for everything. When worried, just remember the words of Bernard de Clairvaux: "Hey, babe, chill. Things could be worse."

Feed the birds.

Listen as the tea kettle whistles. Watch it steam up the kitchen windows. Write down Grandmother's recipe for potato pancakes Parmesan, before you lose it again. Avoid throngs. Laugh out loud when you feel like it. For one day, leave your wristwatch at home. Learn to whittle; throw shavings into the fireplace, where they will do some good.

Break the mold.

Drive a different route to work. Say good morning to those glowering faces in the elevator (don't worry: Most people don't bite). Be aware of the fact that that rock salt on sidewalks can kill grass. Watch dawn arrive; see how many colors the sky turns.

Take a deep breath.

Count your blessings.

Harboring a grudge against someone? Has it helped? (Didn't think so.) Sing, if only in the shower. Get older family members to tape their reminiscences. Wiggle your toes. Next time you make chili, add extra spice. Whistle while you work. Go for a good long walk; stretch those legs, including those important Achilles tendons, so easily forgotten in the hectic pace of today's living.

Take the dog.

Remember what my father used to say. When I was a boy, and about to head off somewhere or other, my father always used to say, "Don't do anything dumb."

Remember to feed the birds.

Take a chance now and then. Look for a new friend. Telephone an old friend. Seize the moment. Believe in yourself. If you keep kicking yourself, you're going to fall down. Davey Crockett, he of the long rifle and wild frontier, said: "Make sure you're right, then go ahead," which put it nicely. A carpenter says: "Measure twice, cut once."

Take your choice.

Breathe deeply. Let your memory slip back to that summer when you were quite small, at the beach with your family, and your father hoisted you onto his shoulders and waded into the lake until his knees were covered. You had never seen so much water. You trusted your father totally.

Close your eyes. Squint hard, relax. How long ago was that first date with the person you later married 25 years? 30 years? More? Certainly a long, long time. Just as certainly, a very short time. How can it be both?

I've no idea. But it is.

Smile. Give a loved one a good, strong hug, just on general principles.

Because we never can tell, can we?

Don't forget to feed the birds.

Think about this for a moment. Humans are said to be the only creatures with a time sense, including an ability to contemplate such a thing as a future. Does it follow that humankind is the only species able to deal with the concept of hope? I suspect that we are. I do believe that the capacity for hope can help us meet stiff challenges.

Open the bedroom window a crack at night; sleep in fresh air.

Take a time-out now and then as a way of reducing stress. It works for sports teams, long-distance truckers and troublesome toddlers; so why shouldn't it work for you?

Seize the moment. Make it your own. One never has quite enough moments, although we don't know this when we are young. Then, if we look ahead, we see an endless stream full of moments, so many that we could never count them, and all of them ours for the taking. Before we know it, though, the stream has shrunk dramatically and the available moments are growing scarce; and we wish that we had gone after them more assiduously when the stream was full.

So, we say again: Seize the moment while you can.

As long as you are seizing moments, use the opportunity to divest yourself of all that residual guilt you're carrying around. Guilt gives us warts and yellow teeth, among other things, and never did anyone any good. Gather up your guilt, wrap with care and send it Federal Express to my cousin Pearl in Bayonne, who can never get enough of the stuff.

Forgive. Smile. Walk. (Oh, do walk when you can.) Share. Reach. Laugh. Teach. Learn. Run. Believe. Lift. Climb. Understand. Explore. Give. Appreciate. And, since you can never do it all, savor the small moments that, aggregated, become great. Stay in the game oh, and do remember to look after the birds.