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Matter of Life & Death: Woman diagnosed with ALS plans a living funeral

Darlene Jibben poses for a photo with her constant companion, Dusty, at Heron Lake Assisted Living. (Beth Rickers/Daily Globe)

HERON LAKE -- Long before she faced a devastating medical diagnosis (and long before there was a movie by the name starring Morgan Freeman and Jack Nicholson), Darlene Jibben had a bucket list -- things she wanted to do before she "kicked the bucket."

She tackled her fear of heights by hiking through the mountains of Arizona, even dancing upon the top of one mountain.

Darlene traveled through Europe, where she located members of her extended family.

She took in the sights of the United States from behind the wheel of an RV.

She caught a ferry to Alaska and lived there for a six-month stint -- twice.

Within days of being told she had ALS -- commonly known as Lou Gehrig's disease -- Darlene braved the streets of New York City by herself, not even detered when a fall on a cobblestone street left her bruised and battered.

Now, Darlene has one more mountain to climb -- that of her own mortality -- and she plans to face that on Sunday with the help of family and friends during a living funeral/celebration of life.

Born to style

Raised on a farm near Okabena, Darlene Aden started pursuing a career while still a high school student.

"During my junior and senior years, I went to beauty school for three months in the summer, then I came back and graduated during my senior year," she explained. "Of course, I had to do everyone's hair for graduation. After graduation, I went back to Minneapolis and finished school at Robinson's Beauty School."

Darlene secured a job as the owner's assistant at one of the top salons in the Twin Cities, where she gained valuable styling experience. But she'd started dating Jerry Christopherson back home, and they got married in October 1968 and had a baby girl, Kris, the following year.

A second child, son Chad, was born in 1972. Darlene worked at a local salon before starting her own in their home.

"When Kris got older, she and her friends would go in there and play beauty shop," perhaps inspiring daughter to follow in mom's footsteps, as Kris now owns Trends Salon in Worthington, Darlene recalled. "I never told her to be a beauty operator, but that's the best way to do it, because she wanted to do it."

Divorced in 1983, Darlene moved to Worthington and worked at the Regis salon. She experienced her first taste of travel, taking a singles cruise with a friend.

Arizona bound

When Kris graduated from high school, Darlene decided to move to Arizona, where her sister, Marlys, lived.

Darlene started working as a hair stylist almost immediately. Making a "stupid" offer of $6,000 on a trailer house in Mesa that was listed for $8,500, Darlene was surprised when it was accepted, and she moved into the trailer park inhabited by mostly retired folks.

"It was the best thing that happened," Darlene explained. "I was 39, and they were all like my grandpas and grandmas."

Eventually Darlene "got hooked up with another guy," and they married in the early 1990s, although that relationship was short-lived, and it's a period in her life that she glosses over quickly. About that time, Darlene moved to Apache Junction, a much smaller community that had beautiful views of the nearby mountains.

Darlene began looking for a house that would have such a view and where she could locate a beauty shop. Eventually, she found a suitable spot and opened Snow Clips, catering to the women who spent winters in Arizona.

"I usually got up at 4 (a.m.) and was working by 5," she said. "It was good for me, because I'm a morning person. It was only me in the shop, but I had three chairs and a hairdryer on the porch."

"And you worked all day long," inserted Kris.

"I had the most fun ladies," Darlene continued about her clientele. "I always wanted to start a laughing club, because I had such good laughers."

Life to the fullest

Darlene felt drawn to the surrounding mountains, even though they frightened her, too.

"When I went down to Arizona, I wanted to go hiking, because I had a fear of heights," she said. "I still have it, but I joined a singles group, and we went hiking all the time. We hiked every mountain out there. It was a fun life. I also went kayaking and had a sailboat.

"We'd do these moonlight hikes at night. There would be 250 people, and you weren't supposed to turn on a flashlight, because it draws away from the light of the moon. Then we'd go back to my house and play horseshoes in the moonlight or play pingpong. They called my house the party house, because I had a huge double garage, and we'd have lots of parties and campfires."

Besides hiking, Darlene also became an avid dancer -- square dancing, round dancing, line dancing, country dancing -- whatever gave her an excuse to move her feet. She even square danced in Germany during a mission trip with her church, then continued on to see the sights in the rest of Europe.

The salon was closed in the summer, so Darlene bought a small motorhome and began to travel during her off months. She'd head to Minnesota to take her two grandchildren on excursions, but also traveled the rest of the country.

Determined to see Alaska, she jumped in her car, drove to Prince Rupert, British Columbia, and hopped a ferry, which dropped her off in Sitka, Alaska.

"I was there six months," Darlene said. "I had three jobs -- at a restaurant, a bed and breakfast, and I did hair at a nursing home. Kris and Chad came up there to visit me that summer. The people at the B&B were Eskimo -- Tlingit -- and they took Chad halibut fishing. I flew back, left my car there at the minister's house and bought another Mazda in Arizona. The following May, I flew back to Sitka and picked it up. I jumped a ferry to Valdez. I had three jobs there, too, and stayed six months again."

The diagnosis

Over the last few years, Darlene began to stumble over little things, and her clumsiness became more prominent.

"I must have fallen 50 times and didn't break anything," she recalled.

"Other than toes," added Kris.

"But the Lord was always with me," insisted Darlene.

"That's for sure, because anybody who fell as much as she did should have had many broken bones," Kris said.

Darlene also had knee surgery and couldn't seem to fully recover.

Finally consulting a neurologist, the diagnosis of ALS came in September 2011.

Also known as Lou Gehrig's disease, ALS is "a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord," according to the ALS Association website. "Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed."

Shortly after receiving the devastating prognosis, Darlene traveled to New Jersey to visit one of her snowbird clients and ventured into Manhattan by herself in order to cross another item offer her bucket list.

"I had my cane, but I stumbled and fell flat on my face. This guy helped me up. That was the joke, that I got picked up by a guy in New York City," shared Darlene, assuming an East Coast accentfor emphasis. "When a friend picked me up at the airport, her eyes were as big as marbles, because my face was all bruised and I was using a walker. She said, 'I knew you shouldn't have gone!'"

Darlene was determined to remain as self-sufficient as she could for as long as she could, but eventually the effects of ALS caught up to her. She was unable to climb the steps at her summer home in Show Low, Ariz., and had to call upon a willing neighbor to boost her up every time she returned home. On one infamous day, she got her purse hung up on the house railing as she was leaving and was unable to extricate herself.

"I sat there for 20 minutes and said, 'Lord, if you get me out of here, I'm going to Minnesota,'" related Darlene.

"And just like that, the strap broke, and she was free," said Kris, who flew down to Arizona to help her mother pack up and drive the motorhome north after a marathon five-week rummage sale to sell off many of her possessions.

Following a brief stint at The Meadows in Worthington, Darlene settled in at Heron Lake Assisted Living, just across the street from where her mother, Evelyn Aden, still lives. Her best friend from high school, Janell Leopold, also comes to visit and help every day.

"She's been my angel as much as hers, with me living 25 miles away," credited Kris.

Celebrating life

Now confined to a large motorized wheelchair, Darlene's disease has progressed to the point where she receives hospice care. Constantly at her side -- or perched on her lap, is poodle Dusty.

"When I was in Show Low two years ago, my sister and I were standing outside the library, and this couple stopped us and said, 'Do you know anybody who wants a poodle? We have to leave town and can't take them with us,'" related Darlene. "I told them, 'I sure don't, but I'll help you find somebody.'"

Reluctantly, Darlene agreed to take the last dog, Dusty, and find it a good home so it wouldn't end up in the pound.

"I took him home and put a sign up, and two days later a lady called and said, 'Do you still have that poodle?' I told her, 'Yes, but we have kind of bonded. But I have to go to Minnesota next week. Would you take him while I'm gone?' ... We became the best of friends, and now she's the one who's going to get Dusty when I pass on. ... He's been my soulmate."

While Darlene is still able to communicate, Kris broached the idea of having a living funeral/celebration of life party, which is planned for 2 p.m. Sunday at the Heron Lake Community Center.

"We want it to be more of a celebration," Kris explained. "The chaplain from hospice is going to speak, there will be a couple different singers, and some young girls are playing a piano piece. I've done a picture video, and we're going to have people come up and share memories. The Turkey Trotters (square dance club) are going to dance with Mom."

Darlene has been able to participate in the planning of the event, picking out her favorite songs and making sure a table is reserved for her high school classmates.

"One of the reasons for having this party is, I've told people, 'If you didn't come to see me before, don't come to see me when I'm dead,'" explained Darlene. "It's a blessing to be able to have it like this, to share my memories and stuff with other people, and know the Lord is right there with me. I really don't have any fear. I'm pretty compulsive, so sometimes I get into trouble, but I always have fun. I used to laugh a lot, but it's getting harder to laugh."

When death does come, there will only be a family memorial service, and the family plans to make a pilgrimage to Arizona to scatter Darlene's ashes over Superstition Mountain, on the site where she once square danced.

"I did it all," Darlene said. "I have no regrets."

"If there was a roadblock, you went around it," commented Kris.

"Or I'd go right through it."

Daily Globe Features Editor Beth Rickers can be reached at 376-7327.