More MS news articles for Jan 2002

In a life collapsed, courage rises anew

For 1 woman, Sept. 11 was a catharsis

Published Sunday, December 30, 2001

EDITORS NOTE: Sept. 11 changed all of us at least a little. But for some, it flipped a switch inside, leading them to steer their lives in new directions. "Turning Points" is about four of those people. This is the final story.

CANTON -- It hurt too much to climb the hill.

For months, Jodie Ainsley tried. She needed the exercise. She has multiple sclerosis, and it's good for her to walk.

So on the days she felt OK, she'd head down to Blalock Street. In Canton, west of Asheville, a lot of the roads are steep. Blalock Street rises, flattens, rises again, enough to make a car engine strain.

Jodie would be fine for the first few steps. But then her legs would tingle and her lungs would tighten and her chest would burn.

She would stop and head back down, taking small steps, careful not to fall.

She had fallen enough.

She had spent 21 years taking care of her son. Ben Ainsley had style. He wore an old-school rapper's Kangol hat and a goth's black fingernails. He also had cystic fibrosis, which causes thick mucus to build up in the lungs. Sometimes he would choke in his sleep.

They lived in Selma, southeast of Raleigh. Jodie was divorced and had two other kids who were out and grown. She and Ben lived on disability and whatever work Jodie could find. Jodie slept next to him on a big air mattress in case something happened during the night.

They didn't have a phone. In August 2000, Ben rode his bike to the store to make a call. A guy came up and wanted Ben's bike. Ben said no. The guy beat him up.

Ben said it wasn't that big a deal. No one filed a police report or tried to find out who did it.

Jodie will always wonder how much it had to do with what happened next.

Ten days later, Jodie came home and found Ben slumped on the couch. The back of his neck had swelled. By the time he got to the hospital, he was paralyzed. He got pneumonia, then an infection. On Nov. 6, he died.

Jodie might as well have.

With Ben gone, she drifted. She lived on peanut butter crackers and juice packs. She stayed with her daughter or friends. She had put some things in a storage unit. One night, she slept there.

She was dried up to nothing and not taking her medicine and she didn't care: "It was like a whole year wasted. I slept and watched TV and that was about it."

Jodie was in her apartment watching TV on Sept. 11. She saw the planes hitting the World Trade Center, the smoke covering New York City, the people jumping out of the towers, trading one death for another.

She thought of all those shortened lives. She thought of Ben. She cried until she shook.

It turns out something shook loose.

When she stopped crying, she felt better. For the first time in months, she felt like doing something. It took her four days to figure out what.

On Sept. 15, she called a friend for help.

I'm moving, she said. Come help me pack my stuff.

She ended up selling most of it. She got $500 for her old car, $200 for her furniture. She kept some pictures, some clothes, an old futon Ben liked.

She left some of it in the old storage unit and took the rest to Canton.

Her mom and stepdad, after years working in national parks, had settled there. Jodie showed up with her things in a suitcase, a couple of pillowcases and a cardboard box.

"It was pitiful," says her mother, Joan Seabury. "It was like, here comes our little bag lady."

Multiple sclerosis damages the central nervous system, and Jodie had gotten worse. She drooled. She put a gel in her water so it was thick enough to swallow. She wobbled when she walked.

But somehow she felt stronger inside.

"My daughter still has a hard time understanding why I left," Jodie says. "She's grown, but she still misses me. But I had to get away, start over.

"Reality is, MS takes a little away from me every day. If you let it go, it can just drag you on down. But September 11 gave me that little push I needed. I know that sounds weird. But it turned on a little light for me. It made me want to hang on."

She called a friend in Norfolk, Va., that she hadn't spoken to in 20 years and made plans to visit another friend in California.

She asked her doctor for Betaseron, which is one of the better new treatments for MS but also has more side effects. She's taking the risk.

She rambled around the mountains. She went to Looking Glass Falls and almost lost her dog. But everything turned out OK. Jodie looked at rocks, waded through streams. Simple stuff. Stuff she hadn't done in years.

She wants to go back to school and study pottery. She wants to get a place of her own in town. She wants to test her body, see what it can do.

She wants to watch the days roll by and think of those who didn't get the chance.

The other morning, Jodie went down to Blalock Street again. She started up the hill. Sure enough, her legs tingled and her lungs tightened and her chest burned.

She almost tripped halfway up. Her feet started to go numb. It was time to quit.

Instead she looked over her shoulder. Saw how far she'd come.

She pushed on to the top