Final column
Awaiting a forceful response, but calibrated, to terrorism

Dickinson
on ALS
On piano as therapy

Toughing it out

60, and still here

Music and the brain's mysteries

Humor as treatment

Nights on the town

Resources
The ALS Association Web site

Editor's note: This special report was produced by projo.com in 1997 on the occasion of a '20/20' profile of Brian Dickinson.

12.15.97
Living with Lou Gehrig's disease
'20/20' profiles Journal-Bulletin columnist Brian Dickinson, who shares his battle with ALS in his writings.

By S. ROBERT CHIAPPINELLI
Journal-Bulletin Staff Writer

EAST GREENWICH -- Brian Dickinson's family gathered round the television Thursday night to watch a 20/20 feature on the Journal-Bulletin columnist's battle with Lou Gehrig's disease, a five-year struggle that has ensnared, enriched and ennobled their lives.

As he watched the end of the approximately 13-minute segment, Dickinson, who can only blink his eyes and smile, did both.

His blue eyes lifted toward the ceiling three times and he beamed his approval as his wife, Barbara, sons Andy, Jon and Matt, and daughter-in-law Ruth praised the national television presentation.

"Now a story about one of the most amazing men we've ever met,'' host Hugh Downs said in introducing the piece.

Dickinson, whose chronicling of his own disease has absorbed and amazed countless local readers, watched from an upraised hospital bed as ABC reporter Dr. Tim Johnson brought his story to a national audience. Barbara sat in a rocking chair by her husband's side, massaging his hand.

To the left of the television set was an aquarium, to the right a bookcase filled with books on everything from international relations to the backyard birds.

Johnson told viewers that Dickinson's deadly disease "has already passed the point where 95 percent of all victims choose to stop breathing. But Brian Dickinson has chosen to keep on breathing, and to keep on writing.''

Unable to speak, his arms and legs paralyzed, Dickinson has continued to produce prize-winning columns with a special computer containing a video camera that reads the movement of an infrared beam reflected off his eyes.

When Dickinson looks at a letter for more than half a second, the computer types it. Many times, Dickinson told Johnson, he has launched completed work into space by staring at the wrong letter.

Family members and nurse Jane King called out the names of nurses and aides who appeared briefly in shots, critiqued their own often brief appearances and cheered a shot of Dickinson's full smile.

Before winning a battle with a health insurer to provide in-home nursing care, Barbara, Andy, Jon and Matthew provided full-time care.

The segment traced Dickinson's early years: his graduation from Harvard, his "temporary'' move to the Journal-Bulletin.

It showed the dinner last May at which Dickinson was honored by the Rhode Island ALS (amyotrophic lateral sclerosis) Association and thanked by Louise Wilcox, a chef who runs an executive dining room in Providence.

She was a long-distance fan of Dickinson's until she, too, was stricken with ALS a year ago and thought of taking her own life.

"My plan was drowning,'' she said. "But Brian, through his articles, really helped me out of that. Helped me to level out. To show me, you know, that's not the answer. And there's a lot of good stuff left.''

As the segment, titled "In the Blink of an Eye,'' unfolded, Johnson explained how what he thought would be the tedious task of watching Dickinson compose a response to his questions letter by letter, became almost a riveting process as he waited for the next letter to emerge.

Barbara told Johnson that she knew the feeling.

"What Brian constantly surprises me with is -- we'll be having a back-and-forth conversation -- I get a little impatient, and I think I'm anticipating the next word. And he fools me every time.''

The segment shows Barbara reading Brian's thank-you speech to that ALS audience last spring and then telling those in attendance: "Sometimes people say to us, `I don't know how you do it.'

"But how could you do otherwise? Every day with Brian is a gift and a joy.''

When the family heard a postscript telling how Andy and Ruth, one of Brian's nurses, fell in love and married, they let out a whoop.

Boswell, the family's Wheaton terrier, joined the celebration with a startled bark while Brian sat serenely in bed, ready for another night's sleep and the dawning of another day.

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