Nick Coleman: Illness, bureaucracy can't stop true love

When they heard of her engagement, lots of people, including friends and family members, tried to talk Joan Kennedy out of marrying Dickie Steele.

He was in a wheelchair. Unable to speak, fed through a tube, using a machine to help him breathe. With a grim prognosis.

Joan had known it might get complicated, right from the start.

"He had this fabulous smile, and a great twinkle in his eyes," she recalls. "The first thought that went through my mind when I met him was, 'Uh-oh, stay away from that one. He's trouble.'"

They met in 1999, when Joan showed up to begin work as a caregiver for Richard Steele, a formerly vigorous construction worker who was living at a St. Paul health care facility after being stricken with ALS, or Lou Gehrig's disease.

Most people with ALS, a progressive neurological disorder, die within five years. By the time Joan met him, Dickie, now 53, had already defied some long odds, surviving for a decade and keeping his sense of humor and upbeat outlook alive.

"He just always had a tremendous attitude abut life," says David Cleveland, a longtime friend. "He used to be this strapping construction worker who loved to hunt and fish -- we used to float down the St. Croix together, fishing for smallmouth."

He wasn't alone.

By the time Joan had helped care for Dickie for a couple of years, the two had become great friends. Dickie communicates by selecting letters on a computer board by blinking his eyes. To answer yes or no, he raises his eyebrows: Once means "no," twice is "yes."

It's slow going but it works. And what came through, as Joan and Dickie became close, was flirtatious fun.

One day, Joan laughed and said Dickie seemed to want to date someone. He answered with a question: Who could want him? That surprised Joan: "Are you kidding?" she said. "You're the favorite of everyone here."

Finally, a date

"I know it's hard to explain," Joan says. "When you care for someone with anything like this, you have to be on such an intimate level that a lot of people can't handle it, and walk away. With the care that I give him, your guard has to be totally down and you have to be totally open. All I know is I can't imagine being with anyone else and feeling as strong for them as I do for this man."

They became engaged four years ago. Joan knew something must be up because Dickie had asked the rest of the staff to leave, he had ordered flowers and he was trembling. She said "Yes," of course.

Then they ran into the well-intentioned concern of friends, and into the harsh realities of the law. The friends could be persuaded; the law proved harder.

Dickie's care costs a lot of money, and Joan can't do it all: Care has to be provided 24/7. If they married, Dickie would lose much of his medical assistance and Joan, 48, would be expected to pay the bills. But with Dickie's pre-existing condition, she wouldn't be able to get insurance for him. The law is no friend to love.

"There are a lot of disabled people in this boat, who love each other and want to be together," says Joan.

With the law and the financial cruelties of catastrophic illness against them, they opted for a different choice:

They went for a marriage made in Heaven.

On Friday, in front of 200 friends and relatives at the River Valley Christian Church in Lake Elmo, Joan and Dickie married under the eyes of the Lord but without the legal documentation -- and burdens -- of a marriage license.

Pastor Jon Neitzell administered the vows. When it was Dickie's turn to answer whether he took Joan, for better or for worse, he raised his eyebrows. Twice.

"As long as we're OK with God, we don't care what the government thinks," Joan said.

Later, there was a reception at the Legion Club in Forest Lake, and Joan danced with Dickie, his chair spinning.

The couple will live in Stillwater and after surviving ALS for an astonishing 19 years, the groom is now a giddy newlywed. Must be true about the love of a good woman.

And a good man.

The answer was simple

"He just has this personality that completely shines through everything," Joan says. "When people tried to talk me out of this, I had a simple answer: