The Oregonian
09/14/03
STEVE WOODWARD

They call it their dance.

She grasps him under his arms and stands him upright from the massage table. She interlocks her feet with his. She hugs him tightly.

Then they begin to move across the kitchen floor, one slow inch at a time.

He can barely lift his feet. His body is paralyzed from disease.

Yet he smiles.

Dennis Obert once danced to reggae music in Jamaica four hours a night, six nights in a row. It's one of his fondest memories.

Now he and his wife waltz toward the wheelchair where Obert spends his days thinking and praying.

They dance.

An angel and teacher day by day, those who know him watch as disease steals Dennis Obert's body and voice.

Gone now is the man who race-walked a mile in less than 10 minutes.

Gone is the man who wrote the architectural specifications for the Fox Tower, Skamania Lodge and McCormick & Schmick's restaurants.

Gone is the man who could offer a touching prayer spontaneously at the request of a friend.

But his friends know the disease has left something far more important: the certainty that it is possible to live one's life -- no matter how daunting the circumstances -- as a message for others.

"I believe he's an angel," says friend Anna Petros. "He's teaching so much through his journey."

Paralyzed from amyotrophic lateral sclerosis, facing death and unable to speak, the Tualatin man has chosen to live as though his remaining life were a joyous dance.

He married Jean Pence just shy of his 60th birthday, quit his architect's job, entered seminary, became a minister in the Living Enrichment Center church and learned to use a computer to speak for him. And he's using his own life to teach others that every moment is a gift, and our greatest treasure is our relationships with family and friends.

Inspired by his examples, a dozen close friends, calling themselves Share the Care, have rallied to help Pence shower, shave and eat, and otherwise care for him each week.

More friends, a group of potentially hundreds of people calling themselves the Friends of Dennis, are trying to raise money for bills -- estimated at $50,000 -- that aren't covered by Obert's health insurance.

"I think what people are feeling is that Dennis is a teacher," Pence says. "Gandhi wanted his life to be a message. Dennis wants his life to be that. Maybe together we do."

Diagnosis confirmed Amyotrophic lateral sclerosis, or ALS, is an incurable and usually fatal disease that weakens muscles and causes severe problems with speaking, swallowing and breathing. The mind, which remains clear, becomes trapped in a body that no longer responds to commands from the brain.

The disease is commonly known as Lou Gehrig's disease, named for the New York Yankees baseball star who died of it in 1941. Its most famous sufferer today is renowned physicist Stephen Hawking, whom Obert has met.

Obert's symptoms first appeared in 1999. While race-walking, his right leg didn't work quite right, and his energy level was too low to keep up the pace. Later, he had trouble mounting stairs. He once fell so hard in a parking lot that he dented a car.

In 2001, his diagnosis was confirmed.

At first, Obert, described by friends as a great dancer, was angry.

"I felt robbed of my retirement," he says through his computer. The laptop reads his laborious one-fingered, four-words-a-minute typing and speaks the words with a flat, vaguely Scandinavian accent.

"I felt angry that I waited so long to do the important work. I felt angry that Jean and I would not have a long time to be together. I felt angry that Jean would spend time as my caregiver. Why does God want me to face this experience?"

But God, as Obert is fond of saying, adjusted his attitude.

He began to prepare himself for the possibility of death.

"I know the door we call death is a new beginning," he says.

In the meantime, he also prepared himself to live fully.

"The key to living with a short time line," he says, "is to live in the moment."

Gaining in spirit His friends noticed his growing optimism.

Before Obert, now 60, lost his voice, friend Mel Bigelow recalls sitting in a Portland restaurant with him, just yards from where Obert had walked his final race.

"Just finally," Bigelow says, "I had to ask the question. I leaned forward and asked, 'Dennis, how do you do it?'

"He said, 'I've got two choices. Which one serves me better?' "

Despair and retreat? Or embracing life, no matter what the limitations?

In Obert's case, the latter.

"I just love being around him," says Petros, who, with Obert, entered the New West Seminary in Oregon City in 2000. "The more he's lost in physical presence, the more he's gained in spirit."

One day, teachers asked seminary students to bring items from their lives that reflected spirituality and ministry. Obert brought pictures and medals from his race-walking days.

"It was heartbreaking," Petros says. "It was incredibly moving."

The seminary accommodated Obert's deteriorating body.

As he lost his ability to speak, he taught teachers and classmates to watch his eyes.

"When he had something to say, he would blink his eyes rapidly at us," says Sue Reynolds, dean of the seminary.

The seminary accommodated Obert in other ways. Because classes were held on the second floor, the school relocated to a building with an elevator. Some classes were held in Obert's home.

Obert continues to work on a master of divinity degree.

"The thing I find really fascinating is communicating with him right now," Reynolds says. "His humor is effervescent. We laugh a lot when we're together. He laughs and cries a lot; it compensates for his lack of ability to talk."

The gray, curly headed, thinly built Obert has just enough natural voice left to laugh and cry -- emotions that he wishes people would express more freely.

Despite his upbeat nature, Obert had seen plenty of grief in his life. His first wife died of lymphoma. His second marriage ended in divorce. His third daughter, Shara, died at 6 months from complications of birth defects. His second daughter, Karen, died at 22 from lymphoma.

Obert still cries out in pain at the memories.

His computerized voice, which does not cry, says their deaths "helped me understand that our life on this planet is precious and short-term."

"I'm really into prayer" Obert fought against his grief.

"I think of him running out the door in his race-walking shorts," says friend Jesse Reeder, who once rented him a room. "He would come back hours later . . . happy and smiling and full of life."

Reeder, a mutual friend of Obert and Pence, introduced them to each other in 1999, just before ALS began to take hold.

Pence, a retired schoolteacher and administrator, was between relationships when she called Reeder.

"I said, 'Do you know any single guys that want to just go out and have fun, go to dinner, dancing?' " Pence recalls.

At that moment, Obert bounded into Reeder's view.

"As a matter of fact," she said, "I do."

Obert and Pence exchanged phone calls for two months before going out on their first date.

"The first phone conversation, he's like, 'I'm really into prayer,' " Pence recalls, "and I'm going, 'Oh, my gosh, what is this, what am I getting into?' "

By the third date, Pence says, she was in love.

"There was something about his spirit, his inner spirit," she says. "I took a picture of him fairly early on in the relationship, where he has this kind of glow that came from his inner self."

About a year after Obert's ALS diagnosis, Pence married Obert. After exchanging vows, they delighted the gathering by riding down the aisle in Obert's five-speed, front-wheel-drive, all-terrain wheelchair, wife in her husband's lap.

They married knowing that Obert had been handed a potential death sentence.

"I was not surprised," Reeder says of Pence, "so much as in awe about the certainty that she loved this man."

Why did Pence marry Obert?

"I think he had to think about it more than I did," she says. "I mean, I was committed to the relationship regardless of whether we got married or not. I was not about to walk out at that point."

A new way to touch Pence used to take her shoes off and prop her feet on Obert's chest while he read aloud to her.

"He had a great voice," she says, "a wonderful voice."

No longer. But the loss of his voice, Obert says, is not as tough as the loss of his ability to touch.

"Fortunately, my personality dynamic does not require a lot of talking," he says. "I do require a lot of touching, and I miss touching."

A tear streams down his left cheek, as his computer voice, nicknamed Harry, speaks.

But Obert touches in other ways now -- with his words.

On a recent summer evening, for example, it was move-in day for Obert's friends Reeder and Dirk Swanson. They had invited Obert to bless their new home.

Ten people sat in a circle. One was Obert, resting in his wheelchair, painted shiny red in honor of Obert's cherished Washington State University Cougars.

After Obert finished saying his prayer, people slowly, silently opened their eyes.

Obert had touched them, just as he has touched friends in business, race-walking and church.

Obert and Pence are similarly touched by the kindness of family and friends, who are planning a fund-raising party and auction for Oct. 18. The event will feature one of Obert's favorite pastimes: a dance.

On that day, Pence will pull Obert to his feet, as she does every day, for their own short dance to his wheelchair. He will barely be able to move his feet. But Obert doesn't need his feet for this dance. His heart, eyes and spirit will do the dancing.

"With Dennis, there won't be a sense of incompletion because things were left unsaid," Bigelow says. "Dennis brings that sense of mortality to us."