Copyright 2005 Winston-Salem Journal
Winston-Salem Journal (Winston Salem, NC)
August 7, 2005 Sunday, METRO EDITION
SECTION: B; Scott Sexton; Pg. 1
LENGTH: 628 words
HEADLINE: BATTLE: WOMAN MUST FIGHT DISEASE AND SYSTEM

Nobody could blame Susan Parris if she just gave up and got on with the business of dying.

Since being found to have ALS - Amyotrophic Lateral Sclerosis, or Lou Gehrig's disease - in April, she's lost the use of her legs, her hands have started to quake, and her strong voice shakes and has become slurry.

She is mired in endless bureaucracy trying to get disability benefits from the Social Security Administration and help from the Medicaid office. And to top it off, her estranged husband recently served her with divorce papers.

Parris, 52, has her good days, but recently, more than her share of tough days.

And yet when you ask her how she's doing, she's liable to say something that will make you stop to take stock, too.

"A real happy day for me is when I can take my wheelchair outside and watch my hummingbirds and finches," Parris said. "So many loving people have stuck by me through this."

She's also grounded in reality. Her children don't want to hear it, but she's planned her funeral. She has signed "Do not resuscitate" instructions in her living room.

"I've had to make a lot of decisions about things you never want to think about," she said. "But you have to."

Paperwork

Parris' son and daughter have had to think about things that they never thought they'd have to deal with, either.

Heather Reyna, Parris' oldest, grew frustrated while maneuvering the system after assuming power of attorney for her mom. She's made the rounds at the Medicaid office and the Social Security office. She has kept watch as files slowly shifted from desk to desk. And she's been on the phone a lot since May.

That's when the latest round of papers from Parris' neurologist got sent to Social Security's disability determination office in Raleigh. A bar-coded fax sent from Dr. Lucie Lauve's office to Raleigh was supposed to speed up the process.

Files involving the terminally ill should move to the top of the pile. But that's not always the case - not when there are only 251 workers reviewing the 116,996 applications that landed in Raleigh between Jan. 1 and July 22.

"I'm sure that to a customer it can appear that we're taking forever," said Rhonda Currie, the chief administrator for disability determination services. "When you have to serve as many people as we do - with quality - it can take time."

The good news is that Parris' application was finally approved last week. She'll get about half of her old salary - not great, but better than nothing.

The bad news is that the process isn't over. Parris probably won't get a check for 90 more days. And her disease is progressing rapidly.

"It's so frustrating," Reyna said. "My mom needs help. She paid her taxes all her life. She's got rent and electric bills. And now she might die before she gets it."

Looking ahead

You wouldn't think a person with a fatal illness would need to worry about paperwork.

"I feel like I'm getting punished for getting this disease," Parris said. "If I could work, I wouldn't have to ask for anything."

Still, she says she tries hard not to let it drag her down.

She says she likes to think about the people with the ALS chapter who arranged for her to get a motorized wheelchair. She likes to think about friends who sit on her porch, hold her hand and tell her that they love her.

To pay them back just a little, Parris sent her former co-workers a tape-recording of her telling them that she loves them, too. "So they could hear my voice before I lost it," she said.

Parris hopes to be around for a charity walk for ALS in October. Until then, she'll cherish the time that she has left.

"You just take every day and try to find something happy in it, something you value," she said. "You just never know what can happen in your life."