The Courage of Brian Dickinson

3/19/95
The courage of Brian Dickinson
By GERALD S. GOLDSTEIN

Stalked by a cruel disease, he has lost his mobility, his voice - but not his intellect. With the support of his family, and through computer technology, he continues to write his column in The Journal-Bulletin.

       IT WAS A TERRIFYING, bruising embrace at bedtime, 11 o'clock, in the home of Journal-Bulletin columnist Brian Dickinson.
        Dickinson's wife, Barbara, had pushed his wheelchair to their bedside. As she had been taught, she braced her knees against his and leaned into the chair. She worked a hug under his arms and lifted, intending to swing him onto the bed.
       But as his inert 190 pounds rose against her she lost her balance, and for one hideous instant the two of them - still tightly clasped - knew the price they would pay.
       "We went down like a log, like whack!" Barbara Dickinson remembers.
       He crashed on top of her - one of her arms still around him - and split his scalp on a fireplace fitting.
       "There was a lot of blood; I was scared out of my wits. I didn't know if I had killed him."
       As he lay on the floor dazed and bleeding, Barbara, herself badly scraped and bruised, reprised a despairingly familiar scene: the frenzied call to 911, the ambulance, yet another late-night ride beside a broken husband to the emergency room at Kent County Hospital.
       Today - 18 months later - Brian Dickinson, 57, has been ravaged still further by the untreatable malady that chains him to the wheelchair: amyotrophic lateral sclerosis, or ALS - Lou Gehrig's disease.

       FROM THE PERSONAL journal of Brian Dickinson, May 5, 1994:
       Things coming apart. 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?
       Often fatal within five years of diagnosis, ALS has gnawed at Brian Dickinson for more than two years, wasting the muscles in his neck, arms, hands, and upper body.
       Shadowed at first by unexplained tingles and stumblings, Dickinson today is limp and immobile - a rag doll in the jaws of a remorseless hound.
       A lifelong communicator who seems driven to continue his newspaper column as long as he draws breath, Dickinson in earlier stages of the disease lost his ability to write by hand and to type. He surmounted those obstacles by dictating into a computer that could convert his spoken words into text. But last year the disease dealt him additional torment - it took his voice.
       Since then, with help from The Journal-Bulletin, Dickinson has found still another way to write his columns, which appear regularly on the paper's op-ed page.
       With his lifeless hand draped over a switch, Dickinson haltingly taps out sentences on a home computer that The Journal has customized for him. Laboring for days to produce what once took him hours, he laces words together with what the disease has spared him: a single finger of his left hand - and his keen intellect.
       Paradoxically, the more Dickinson's body betrays him, the more upbeat are his words. In print, he advises: Love. Laugh. Hug. Plant crocuses. Feed the birds.
       He exhorts his readers to celebrate simple pleasures - as he does. But few in his audience know the magnitude of the private struggle, both physical and emotional, that underlies his graceful, inspirational prose.
       From Dickinson's journal, September 4, 1994:
       I am so terribly sorry to all of you, my dear family, for the many stresses that my illness has brought to this house. I'm grateful beyond words for the care and patience you are showing me. Please remember for all time that I love you above all else.

       FORTUNE SMILED on Brian Dickinson that frigid February day in 1991.
       After a last morning of skiing in Quebec, he and Barbara stopped for steaming bowls of onion soup and then headed their Alfa Romeo south toward Rhode Island.
       An hour out on the six-lane highway, with Brian driving, the car skidded on black ice. It struck a guardrail, flipped end over end, and rolled over three times, scudding on its roof down a ravine.
       When it was over, Brian and Barbara Dickinson found themselves hanging upside down, strapped in by their seat belts - with Mozart still playing on the tape deck. They crawled out unhurt, save for Barbara's two black eyes and strained neck.
       Grateful that they were spared, the Dickinsons had no way of knowing what awaited them as months would pass - mysterious episodes of weakness in Brian that at first seemed more curious than frightening.
       Surely, the couple thought, this was a belated reaction to the accident in Canada - maybe a disk injury.
       By the summer of 1992, curiosity had turned into unease. Dickinson complained that on his way into the Journal Building each morning he was unable to dart across busy Fountain Street with his former agility. And he seemed to have lost his sea legs; he began falling on the family sailboat.
       When he and Barbara took their usual walks around the neighborhood, in Warwick, "he was noticeably dragging his right foot and asking me to slow down," she recalls today. But with the car accident etched on her memory, Barbara says, "I still wasn't putting all this together into anything ominous."
       Until Thanksgiving.
       For the Dickinsons - lovers of food, wine, and conviviality - Thanksgiving is the year's major holiday: old friends from out of state arrive on Tuesday and stay through the weekend.
       During that week in 1992, Barbara Dickinson cooked abundantly, preparing a special pre-holiday dinner for Wednesday evening - veal stew with wild mushrooms and a chocolate souffle for dessert. Red wine flowed. The meal lasted until after 9; then the Dickinsons and their guests stepped outside to walk it off.
       Immediately, Brian began stumbling. Too much wine, everyone said, laughing and teasing. But suddenly, the laughter evaporated.
       Dickinson had stopped in his tracks; he could not lift his right leg.
       Holding him up as best they could, the others took him home. One of the guests, a nurse, insisted that he see a doctor, pronto.
       It was becoming clear that a beast was stalking Brian Dickinson.
       FROM DICKINSON'S journal, undated, and written detachedly in the third person:
       On being alone, paralyzed, flat on his back. . . . He's losing it Perhaps his family, too. Perhaps at once they'll all succumb to stress, collapse and wither; crack, split, rupture. And grow still. The wonder is it hasn't happened yet. Six seasons' worth of knowing; lives turned turtle; open- ended misery; awareness all around of what's to come is matched by fear to give it voice.

       The tremors - that's what gave it away, a neurologist said when he examined Dickinson on December 3, 1992.
       "I could feel them at night when I would snuggle up to him," says Barbara. "In his legs first, and then his shoulders and arms. They scared me; I would move away."
       The doctor said tremors are signals that ALS is carrying out its deadly invasion, attacking the nerves in the brain and spinal cord that make the voluntary muscles work.
       Having survived the car crash nearly a year earlier, Dickinson was now facing a far greater trial. Barbara remembers exactly how the doctor broke the news as they sat in his examining room, with Brian still in his underwear:
       "He said, 'This is ALS and there's nothing you can do about it. You might as well go out and have dinner.' And he turned on his heels and walked out.' "
       The beast had been uncaged.

       FROM THE JOURNAL, late in 1993:
       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'm experiencing on the other hand. My hands and arms have lost most of their strength. I cannot dress myself, wash myself, feed myself, shave myself. . . . It is devastating.

       The diagnosis had exploded like a bomb in a family that seemed to have everything: their gracious house in Warwick; the means to vacation in France and Hawaii; fulfilling jobs, she as teacher, he for 30 years as Journal- Bulletin reporter, editorial writer, editorial-page editor, and prize- winning columnist.
       But companionship, not material success, has been the wealth of this couple over a 33-year marriage.
       Brian Dickinson met Barbara Jaros in New York City when he - a Harvard graduate from Missouri - was a news assistant at The New York Times. She was a Smith graduate from Colorado, working as an editorial aide at Mademoiselle magazine.
       "He was smart, good-looking, and he was funny," recalls Barbara. "We knew the same people. We explored New York. We had a commonality of interests - in paintings, in what we read.
       "We were never boring to each other; we had a life of the mind, and outdoor stuff, too. The loss of my friend has been at least as devastating as the loss of my marriage partner. It's lonely already."
       And it's frightening in an additional way. Despite the family's relative prosperity, money worries have intensified. Brian's 70 daily pills - mostly non-prescription items, such as vitamins - are not covered by his health plan, and cost $150 a week. His four-day-a-week physical therapy, $20 a session, isn't covered; the staircase lift that gets him up to bed cost $5,000.
       And there is always the financial future. What it holds is unknown. Still, the family has vowed never to put Dickinson in a nursing home.
       Dealing with his ALS, struggling with the bureaucracy of health-care insurance, and balancing her own daily responsibilities have thrown Barbara Dickinson into an emotional crucible.
       "In the beginning I was terrified - I was irrational. I wandered around and cried and cried. I thought I was going to lose everything - my husband, my house. How long would it last? How vicious was the disease going to be?"
       Despite her dedication - she works all day and cares for Brian overnight when he wakes in their bed and needs help - she feels guilty, because "sometimes I feel sorry for myself."
       "I wasn't mad in the beginning, but I got mad last fall. I was mad at Brian. I was really pissed at Brian for getting this disease. It wasn't supposed to be this way at this time in our lives. We were going to do stuff - we had a lot of plans.
       "Then I thought, 'What kind of a person am I? He can't help it.'"
       "I walk around the block at night a lot, crying. A few times I've even pulled over on Route 95 to cry. You cry until you're almost sick, and then you put on the dark glasses and go to the grocery store."
       Barbara Dickinson sees a psychiatrist weekly - the $125 visits are not covered - to help her sort out her thoughts, and she says that the therapy helps.
       "You need someone that you can ask, 'Am I lost? Am I nuts?' "

       FROM THE JOURNAL, undated:
       I'm feeling pretty good about things just now. . . . I am almost on an even keel. Almost. When I discover an itch that I can't scratch, or squirm around in the confines of my wheelchair to ease numbness that a day of sitting has inflicted on my backside, then I am reminded again that ALS has me tight in its grasp and isn't about to let go. But then, neither am I. What the hell. Unless things get much worse for me than they are now, Go.

       Over the past two years, Dickinson's physical condition has indeed worsened. ALS has mocked the care and constancy provided by his wife and his three sons: Andrew, 26, and fraternal twins Jonathan and Matthew, 24.
       College graduates who were living out of state but had not yet settled on careers, Andy and Matt moved back home after their father's diagnosis, vowing to tend him full time. Jon - whom Brian ordered to finish up at Hobart College before moving home, in the spring of 1993 - now has his own apartment, but he, too, takes a regular shift caring for his father, and spends much of his time in the house.
       When a health aide leaves for the day, at 3:30, each son assumes "Dad Duty" - one day on, two days off - until bedtime. On their days off, they do part-time work, mostly carpentry or outdoor labor, where they can find it, and also help with household chores.
       Dad Duty ranges from untangling computer glitches to putting Dickinson on a commode to driving him to Scarborough Beach - especially in winter, when the crowds are gone - where they can wheel him along hard-packed sand near the water.
       Creative care is often the watchword. When Dickinson lost the use of his neck muscles, Andy designed a halo brace, on a stem bolted to the back of the wheelchair, which supports his head.
       Since his diagnosis, the sons of Brian Dickinson have seen the pages of their father's life turn far too fast. They watched as his initial reliance on a cane turn into a need for two canes. Then a four-pronged cane appeared; then a walker; and finally, the wheelchair.
       Although he can still eat his favorite foods if they are processed in a blender and spoon-fed to him, a surgically implanted feeding tube for liquid supplements protrudes from Dickinson's abdomen. Sometimes the tube slips; Andy says he has learned how to reinsert it.
       Each time the Dickinsons accommodate to such new, disconcerting responsibilities, another setback seems to develop.
       One grave disappointment was the termination last year of unsuccessful testing on an experimental drug Dickinson and hundreds of other ALS victims were taking, a drug that researchers had hoped might slow progress of the disease. In the Dickinson household, the failure of the test blew out a flame of hope.
       "Everything went to hell for a while," says Andy. "The mood - the whole energy level of the house - got knocked down many pegs."
       Andy Dickinson has collected too many memories for a man so young. He remembers, for instance, entering the emergency room after one of his father's falls and seeing him hooked up to an array of equipment.
       "I kept looking at that heart monitor and thinking, 'Oh, this is big-time - my dad's going to die right in front of my eyes.' "
       Most of all, Andy remembers what happened on the awful evening of December 3, 1992, when his parents told him of the diagnosis.
       He recalls his father's vowing that "we're going to fight the good fight - we're going to fight this like a tiger."
       But then, Dickinson wept.
       Spontaneously, Andy - 23 years old and nearly 6 feet tall - did something that still amazes him:
       He sat on his father's lap.

       FROM THE journal, undated:
       I know what's going on; I can see it in my leaden limbs, my face that bears the marks of fear, and fingers that, despite entreaties, work no more. I feel it - in my mouth, where spittle trickles unrestrained, like old men's drool; and in my lips, which, dry and cracked, can scarcely work a straw.
       I hear it in my gummy strands of speech: residual hums and growls and groans cannot be parsed, remain unknowns. All these signs declaim decay, and if they so present to me, how much more starkly must they seem to wife and sons.

       The wheelchair was indeed a stark and undeniable milestone.
       But it mercifully brought an end to the falls - which were especially dangerous because the weakening Dickinson reacted too slowly to break them with his arms.
       "It was crash-smash down," says Barbara.
       Dickinson fell everywhere: outside the office of a psychologist the couple were seeing together; outside the Journal Building. Once, as Barbara slept, he fell backward in the bathroom: his head hit the floor with enough force to knock him out. Again, 911; again, a household wrenched from slumber and into the emergency room, deep in the night.
       Each episode was petrifying, and heartbreaking - especially one in which Dickinson pitched onto his face. The fall broke his two front teeth.
       "Afterward, he cried and cried," Andy recalls. "Something like that stays with you for weeks."
       More trauma awaited. Dickinson's voice, which over months had thickened and slurred, went silent.
       That loss, with its implications of isolation, depressed him for weeks. It also impelled The Journal to seek assistance from the University of Massachusetts - Dartmouth, where researchers have developed computer systems for the disabled. Working closely with Andy, they devised the program that Dickinson uses today.
       The computer holds an alphabetized 5,000-word glossary and a cursor that constantly scans it on the screen. When the cursor reaches a word he wants, Dickinson taps a switch. The cursor stops, grabs the word, and moves it into the text he is writing on another portion of the screen.
       Sometimes, Dickinson's finger moves too slowly and the cursor bypasses a needed word. So he must try to snag it a second time, or a third, waiting long seconds for the cursor to retrace its path.
       Likewise, he must search out every punctuation mark. And if a word he wants is not contained in the glossary, he must build it letter by letter as the cursor scans the alphabet.
       "It takes so much effort for him to write that I'm almost awed," says Barbara - adding with a chuckle that her grammarian husband, even when he clicks out mundane instructions to the family, takes pains "to make sure all the semicolons are there."
       Dickinson's computer is linked directly to The Journal's, so he can send his columns from home and receive research material from the news library. And, in a limited way, his computer has given him a voice: it's programmed to speak short phrases that he taps onto the screen.
       But each new technological marvel means that Dickinson has lost more ground physically. Says Andy: "Every once in a while my stomach drops out when I realize what is really going on. It's like a bullet hits me."
       Similar thoughts torment the others - and haunt their sleep.
       Says Barbara: "Every single one of us has dreamed that Brian walks and talks again - vivid, vivid dreams. But you wake up every morning and it rolls back in on you the second you open your eyes."
       Despite their perseverance, his family cringes at any suggestion that they are heroic.
       "I'm no braver or more special than the next person," says Jon. "But I know I've never given to anyone like I'm giving to my father. Maybe everyone has it in him; everyone can do it - I think. I don't know."
       Dickinson's sons say they have found a certain fulfillment in what they are doing for their father. But they acknowledge that the cost has been dear, and that resentments bubble up with regularity.
       "There's very little tiptoeing in this family," says Andy. "If you're mad at Dad, you scream right in his face."
       Jon says that although he remains committed to caring for his father, "I had to cancel a lot of plans. I felt that my wings were being clipped. I see my friends graduating from law school, or getting master's degrees, or getting promoted at work."
       And, he says, during the time that all three brothers were again living at home, inevitable squabbles broke out. "We were fighting the same fights we fought when we were thirteen," he says.
       But Jon is convinced that the situation has brought him closer than ever to his father.
       When he looks at Brian, Jonathan Dickinson is consumed with sorrow and brightened with inspiration:
       "He's someone I always looked up to, someone to take care of me and be there for me; and now he's not strong. Now he's hunched over and weak - in the body. But one thing I've learned: a body is just a body - the real person is on the inside. And on the inside, he is the strongest person I know."
       Matthew Dickinson also finds satisfaction in what he is doing, but is so torn by his father's condition that he cannot bear to look at old family photos.
       "On my worst days," he says, "I have wanted to run away from it. But it has also given us a freedom to step back and realize what's important - the family unit." As for stress, Matt says he feels plenty of it in this unusual, volatile household: "My brother Andy calls it a big psycho-soup, to be stirred and heated."

       FROM THE journal, undated:
       Is this the way the life ends? With yet more family pissing bouts adding charm to a sullen Sunday afternoon?

       Brian Dickinson, brought up Presbyterian but no churchgoer, is nonetheless deeply spiritual, says a long-time friend and admirer, Rabbi Leslie Y. Gutterman, of Temple Beth-El, in Providence.
       "He has taught us how extraordinary the ordinary is - walking in an open field, cutting firewood. He is able to see the world and the miracles; we often walk through life sightless when miracles surround us. It is almost a matter of his saying, 'Wake up from the things that cause you to have false priorities.' We can't control what life does to us, but we can control our attitude toward those circumstances. He has made it a glory."
       Rabbi Gutterman met Dickinson years ago at the Providence Journal - Brown University Public Affairs Conference, an annual conclave that examines issues including ethics, crime, cities, the environment, and the family. One of the conference's chief planners over the years: Brian Dickinson.
       "Brian was the Renaissance person in the group," says Robert A. Reichley, Brown's executive vice president. "He knew something about everything," Reichley says of Dickinson, who has a master's degree from Brown.
       Reichley clipped a recent Dickinson column about appreciating small pleasures and sent it to his grown children, telling them: "You're just starting out in your youth; there's no better philosophy in life than this."
       Reichley recalls how torn he was during a visit to Dickinson's home last year with Stephen Hamblett, publisher of The Journal-Bulletin:
       "It's always hard to see genius trapped through some physical disability . . . that part was hard. But I also found to my delight that there was a Brian there - that the body, even in its frailness, can't always dampen the human spirit."
       Hamblett says that he is strongly committed to supplying Dickinson the computer technology he needs as his condition worsens. And Dickinson still receives his full pay, even though his output has gradually lessened from two columns a week to about one.
       "It was the determination on his part that stimulated us to respond," Hamblett says. "And it's not just one way. Right now, he's doing some of his best writing.
       "From a very personal perspective, he's made a lot of us realize how lucky we are. He's effectively reminding our readers that they'd better smell the roses - he has done it."

       FROM THE journal, November 5, 1994:
       Barbara . . . went to Schartner Farms, bought 250 tulip bulbs and with help got them planted. I hope to be here for the display next spring. Perhaps I will be.

       Dickinson's commitment to treasuring life, instead of capitulating to death, began shortly after his diagnosis, when he consulted Dr. Robert H. Brown Jr., a neurologist at Massachusetts General Hospital and an expert on the little-understood disease - who told him that serious research was ongoing.
       "We were not ready to consider fatality at that point, and we still aren't," says Barbara Dickinson. "We recognize that he is in a desperate fight, but we have not resigned ourselves to his not winning. It doesn't mean that we're in denial or that we're slaphappy optimists; we have faced the monster. But we aren't going to give up yet."
       The family takes further hope in knowing that some people, including the noted English physicist Stephen Hawking, have lived long beyond the five-year survival estimate; Hawking has survived with ALS for 25 years.
       Still, a pragmatism creeps in at times. Says Barbara: "What will kill Brian will be respiratory failure, paralysis of the diaphragm. But Brian's is still good, and that's tremendous news for us - it buys us time while a lot of research goes on."
       The family's insistence on optimism has clearly exacted an enormous emotional toll. But at the same time, say close friends, what the Dickinsons are accomplishing together is astounding.
       For this family, bravery has been built on terror, uncertainty, and anger; on quarreling, shouting, and tears; on affection, commitment, and tenderness; on the whisper of a strapping grown son: "I love you, Dad."

       FROM THE journal, July 6, 1994:
       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.

       A conversation with Brian Dickinson is an extraordinary exercise, a blend of Twenty Questions, the slow tapping of his brief responses into the computer, and one-sided chitchat - except when the machine bursts forth with a voice-synthesized aphorism.
       "One Day at a Time!" it blurts out at his command.
       Some who know Dickinson say they feel guilty for not stopping by to socialize; they fear they'll feel awkward.
       Dickinson senses this. In his journal he has written of his condition, "Is it embarrassing? Certainly not for me, but I suppose it is for those friends and acquaintances who have chosen not to visit."
       As his voice was beginning to weaken, Dickinson observed wryly in his journal that "visits from friends are . . . a plus, but they do intrude. They force you to be on your best behavior, sit up straight, not mumble, have the wine bottles hidden . . . "
       As for feeling uncomfortable in his presence, visitors need not worry. He manages to set friends at ease in small ways - a wiggling of the eyebrows to signal he agrees; a combination groan and chortle that is clearly a laugh; and confident eye contact that says he is still himself.
       Dickinson's professional stock in trade is political analysis - he's unabashedly liberal - but long before his illness he often used family anecdotes as fodder for lighter columns. Since the onset of ALS, personal matters have played increasing roles in his work.
       His observations are strikingly effective, say the scores of readers who send him letters. One of his columns so moved her, said a Massachusetts woman, that she read it to her family at Thanksgiving dinner.
       "You've really enriched my life," she wrote.
       What impels him to write, despite it all?
       When a visitor asks that, Dickinson's finger resumes its tapping at the computer switch, and on the screen, an answer slowly builds:
       "Family strength has been the single most valuable asset. Without their help, love, and constant support, I don't know how I could keep fighting."

       FROM THE journal, July 22, 1994:
       Hot and humid outside . . . Barbara, Matt and Andy have planted more roses, day lilies and annuals . . . this morning Jon made delicious pancakes, and now, at noon, I have returned to the computer. Not very exciting, perhaps, but at least I can create this way, and exercise a little control. Five good things. Family love. Eye and ear. Appetite. Fan. Peace.

       Late morning on a typical workday: Brian Dickinson faces his computer, and his thoughts. The only sounds are the insistent tapping of his finger at the switch and a whir of wings outside his living-room window, as titmice cluster at a hanging feeder.
       Feeders are everywhere - perched on poles in the backyard; stuck by suction cups to kitchen windows.
       On Dickinson's computer screen, sentences lengthen haltingly as he struggles with another column - letter by letter, word by word.
       Tap. Tap. Tap.
       When in doubt, feed the birds.
       Tap. Tap. Tap.
       Laugh out loud when you feel like it . . . Learn to whittle . . . Smile . . . Give a loved one a good strong hug.
       Tap. Tap. Tap.
       Forgive. Smile. Walk. (Oh, do walk when you can.) Share. Reach. Laugh. Teach. Learn. Run. Believe. Lift. Climb. Understand. Explore. Give. Appreciate.
       Tap. Tap. Tap.
       Oh, and do remember to look after the birds.

       WATCHING Dickinson's labor, a stranger might wonder why he keeps on. But not Rabbi Gutterman, who says of his resolve:
       "This is not an example of how to die with courage; it is an example of how to live with meaning."
       And Gutterman ventures an opinion: What the observer sees of this newspaper columnist, hunched in his wheelchair and riveted to his work, is mere illusion.
       Brian Dickinson, he says, is no frail, birdlike form pecking at words. This is a man of strength, climbing mountains.

       AMYOTROPHIC LATERAL SCLEROSIS - Lou Gehrig's disease - strikes without regard for race or sex, according to the ALS Association of Rhode Island. First diagnosed in 1869, the disease bears the name of the New York Yankees superstar who died of it in 1941, at age 38. In only 5 to 10 percent of the cases is ALS inherited; otherwise, it hits randomly, as it did Brian Dickinson. The disease is not contagious.
       The ALS Association estimates that at any given time 30,000 Americans have the disease, and that each year 5,000 new cases are diagnosed. The expected survival time from diagnosis is two to five years, says the association, although some victims live longer.
       For information on support groups and making donations toward research, write to ALS Rhode Island at Box 8573, Cranston, Rhode Island 02920. Telephone (401) 732-1609.
       Gerald S. Goldstein is The Journal-Bulletin's South County regional editor.