BY MEGGEN LINDSAY
Pioneer Press
TwinCities.com

What Anne Keeler could do two weeks ago, her body can now no longer manage.

The Eagan resident is struggling to cope with Lou Gehrig’s disease — a fatal and muscle-wasting condition. But despite her grueling battle, she finds a way, just about every day, to laugh. She cries too, she admits, but mostly she laughs, finding humor and preserving her dignity in the most difficult of situations.

“You don’t get to plan when you die or how, but you can decide how to live your life,” said the Eagan resident, fighting to speak through the voice amplifier resting next to her motorized wheelchair.

Keeler, 53, gathers much of her strength — and optimism — from the certainty that an unflagging group of supporters will brace her even as her body fails her.

A circle of more than 40 relatives, friends and near-strangers came to the aid of Keeler and her husband, Gordon, within six months after she was diagnosed with the neurological disorder amyotrophic lateral sclerosis, or ALS, in July of 2003.

Since that diagnosis, the disease has stripped Keeler of her mobility: She can no longer walk or use her left hand, and week by week, her voice is fading. But as the mother of two began to lose her independence, the support group stepped in.

“If I didn’t have this group, I wouldn’t be able to stay in my home. It’s that big to me,” Keeler said. “I need someone to come every day and help me out of bed, help with personal things. With ALS being so progressive, it changes all of the time. So my helpers learn with me.”

The support group, named Share the Care after a handbook guide and Web site with the same title, is hosting a benefit and tribute Sunday to help the Keelers pay their skyrocketing medical bills. Keeler and her husband hatched the idea for the fund-raiser while they were selecting the readings and music for her eventual memorial service.

“And Annie said: ‘Gee, I’d like to be there. I don’t want to miss this,’ ” Gordon Keeler said.

In addition to fund-raiser planning, the Share the Care group meets regularly to decide who helps Anne Keeler when.

“It gave us a system,” she explained. “This way I don’t have to ask anybody for help. And then nobody has to say no to me.”

The group convenes quarterly and picks one volunteer to be a leader each week. That leader then e-mails Keeler’s schedule and daily needs to the group, and volunteers sign up.

“People who were casual acquaintances — well, we now have some quite intimate moments together,” she said with a laugh.

The chores people help with range from the mundane — bringing dinner and running errands — to extraordinary assistance. Last week, nearly a dozen men piled into the Keelers’ bathroom to help make it handicapped accessible.

Those involved in Keeler’s Share the Care say they get as much out of helping her as she does.

“The truth is, Anne is the one who has shown us the way. People usually back away from terminal illnesses, but Anne was right out there, upfront,” friend Barb Hayden said. “She sort of guided us in how to react to her and how to behave.”

Keeler’s ALS diagnosis came 15 years to the day after her father, Dick Pollari, was diagnosed.

Until her diagnosis, her family did not know that her father’s type of ALS was genetic; there is a 50 percent chance that her five siblings and her daughter carry the gene as well. (Her son is adopted.)

Keeler, who worked as a registered nurse and dental hygienist before the disease hit, said spending a lifetime as a caregiver made it that much harder to accept her condition at first — and the outpouring of support.

“I want to be able to accept my help with grace,” she said, gazing out her window, away from the coterie of friends clustered around her kitchen table. “You have to get over all your inhibitions, but people are so good about helping me maintain my dignity as I become less able to do things.”

She tries to spend as much time as possible with her husband and now-adult children. Married 30 years in March, Keeler said their union has never been stronger.

“There’s no time to bicker,” she said. “That stuff just no longer matters.”

Her son Brian, 20, attends North Dakota State University, but visits often. Daughter Bonnie, 25, now attends graduate school at the University of Minnesota, after giving up her job as a marine biologist in Cape Cod after her mom got sick.

Anne and Gordon Keeler had just become empty-nesters when her condition was diagnosed, and had planned to spend their retirement years traveling.

“It was utterly devastating,” Gordon Keeler said. “All of our plans, all of our dreams we had together just vanished in one day.” From a Caribbean cruise to hiking up Mount Rainier, “we lived life as fast as we could,” she recalled.

And now, Keeler spends her time trying to spread the word about Share the Care groups, and works to raise money for ALS research.

“If it wasn’t for all these people, we have no idea how we’d cope with this,” she said.