Deseret Morning News, Tuesday, September 07, 2004
By Elaine Jarvik
Deseret Morning News

At night now, after their baby is asleep, Bryan and Kim Openshaw lie in bed talking. On the laptop in front of them the words begin tentatively, a w at first, perhaps, and then an a. Wasn't, the sentence might begin.

Wasn't Brinley cute today?

Bryan stares at the screen, his head propped against the pillows, as Kim launches into her end of the conversation. When it's his turn to respond, Bryan begins his slower reply, the letters taking their time to march across the screen. It's a tedious process, and, frankly, sometimes Kim falls asleep.

So much at the Openshaw house is about communication these days. At 16 months, Brinley is learning that everything in her world has a name and the names have sounds, and even if she doesn't say them exactly right the grown-ups in her life get excited when she tries. At 36, Bryan knows that a man who can't speak still has a lot he wants to say.

Bryan was diagnosed 4 1/2 years ago with amyotrophic lateral sclerosis, also known as ALS and Lou Gehrig's disease. The degenerative condition most recently caught the public's attention because of the best seller "Tuesdays With Morrie."

With ALS, the nerves no longer communicate with the muscles. Tighten those biceps, the brain might instruct, but the message never arrives. Eventually the muscles, figuring they're superfluous, deteriorate. Bryan's first symptom, in the fall of 1999, was a slurring of his speech, a development that Brian at first dismissed as fatigue.

A few months later he went to a neurologist, who stuck pins in his back and arms and legs and tongue, sending electrical impulses from one end of a nerve to the other. If the problem really is ALS, these impulses will take longer than normal to make the journey.

A young woman's first impulse on hearing that her boyfriend has ALS might be to run the other way. But when Kim heard about Bryan's diagnosis and watched him face it without a trace of self-pity, she knew, she says, he was exactly the kind of person she wanted to be with. Bryan, she realized, was one of those people for whom "difficult times would make them better rather than tearing them down." Their wedding was in August 2000, six months after the doctor delivered the bad news.

Steadily, just as predicted, Bryan's muscles have weakened. At first he wasn't strong enough to apply the brakes on his mountain bike, then he didn't have enough strength to pedal, then enough strength to walk; now he can't move his arms or legs. He can't chew or swallow, so Kim has to suction his throat, wipe his face when he drools, feed him through a tube. When his head falls too far forward, he is too weak to lift it back; his lips are too weak to form the consonants required to make the most basic of words.

Sometimes words fail anyway. What would be the one, for example, to describe how Bryan faces his illness? Stoic implies a grimness Bryan doesn't feel. Upbeat isn't positive enough.

Denial was the word Kim figures Bryan's doctor had in mind when he first made the diagnosis. Are you sure you understand your prognosis of two to five years, the doctor wanted to know when Bryan refused to feel sorry for himself.

On the little computer screen mounted on his wheelchair, Bryan begins to explain his philosophy: In every situation in life we have the ability to choose how we react before we let impulse dictate how we are going to react.

Bryan communicates via an elegant piece of software known clumsily as "predictive text-entry interface." There are several of these free technologies available, but the one Bryan chose, after researching it on the Internet, is called Dasher.

Using a tiny reflective dot, placed on the frame of his eyeglasses, Bryan types by moving his head ever so slightly, focusing on an alphabet on the screen, one letter at a time. It's a laborious process but is made faster by Dasher's technique of word groupings. So, for example, if Bryan wants to type muscle, he will zero in on the m, and then on the nearby mu grouping, rather than having to search farther down the alphabet for the u, and so on. The result is fast-paced, and less horizontal than it is deep; to use Dasher is to feel that snowflakes shaped like letters are flying frantically at you as you drive headlong into a storm.

Because it is predictive, the program also tries to guess, from the first few letters of a word, exactly what Bryan has in mind, choosing from words he has used in the past. Still, there are glitches. Muscle, on a recent day, came up murder. And there are words it apparently has never heard before; it took several stabs before Dasher realized that Bryan was typing tribulations.

Some of the best things in life are learned through tribulations. If you have a bad attitude during life's trials then we miss out on a lot of blessings and knowledge.

Bryan used to be a building contractor, a rock climber, an extreme mountain biker, a barefoot water skier. He spends his days inside now, in the wheelchair. He isn't a couch potato, though.

Ironically we watch very little TV. I get a lot of satisfaction and entertainment watching Brinley learn and interact. ALS has given me the blessing of being able to be with her 24/7.

At night, members of his ward of The Church of Jesus Christ of Latter-day Saints in Jeremy Ranch, Summit County, come over to help hoist him, via a harness, up the stairs to the bedroom. That's two neighbors a day, without fail, for the past two years. It is this support from friends and family, especially Kim, as well as his faith, he says, that has kept him going. His faith teaches that he will have the rest of eternity to be with Kim and Brinley.

In the meantime, across the room, his wife and little girl are reading a book. Neigh, says Brinley as Kim points to a horse. At his computer, Bryan zeroes in on the alphabet, patiently explaining himself.