July 23, 2003
By Diane Majeske
It’s the last sentence on the page, a poignant afterthought in a few notes scribbled about a life-changing disease.
“If you want to know how it feels to live with MS,” writes Virginia Phillips, “tie a 10-pound bag of flour to your leg and never take it off.”
“Never” is underlined with a vengeance.
Phillips, who was the president of Marc T. Nielson Interiors in Jackson Township for 30 years, was diagnosed with multiple sclerosis in 1998.
She joins the growing ranks of thousands diagnosed each year, one of hundreds in the region alone who cope daily with a mysterious, unpredictable condition for which there is no cure.
On Tuesday, more than 400 of those suffering from the disease — which is statistically primarily women — met, chatted and supported each other at a Valparaiso fund-raiser that featured actress Teri Garr as the keynote speaker.
All different, they were united in their strength.
Multiple sclerosis, often misunderstood, is a chronic neurological disease that affects the central nervous system.
The central nervous system — the brain, spinal cord and optic nerves — is protected by a fatty tissue called myelin, which surrounds the nerve fibers and helps them conduct electrical impulses.
In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. When myelin is damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted.
This produces the very individual, very unpredictable symptoms of MS.
“I don’t have any choice over anything my body does,” says Laura Conant, a Schererville resident diagnosed in 1997. “But I do have a choice over my attitude. And I choose to have a good one.”
Conant, formerly an emergency room nurse and an avid hiker who trekked the trails near her home in Colorado, suffered progressively debilitating weakness in her legs and has lost the ability to walk.
She moved back to Indiana last year to be with her family.
“It’s been very difficult for me,” she admits. “I thought I was a strong person ... but when it comes to yourself, to something like this, you find out how strong you really are. A person who has to live with a chronic illness is stronger than anyone can imagine. I’ve tapped into an inner strength that’s frankly pretty amazing, I think.”
Debbie Barniville would agree. The Portage resident, diagnosed 20 years ago, is now the facilitator of a self-help group for MS sufferers through Porter Memorial Hospital.
“If anyone would ask me, 'Do you wish you never had this?’ I’d have to say no,” she says. “Because then I never would have met the wonderful people who come to this group. I draw from their courage and strength and hope, and I can use all the strength and hope I can get.”
The course of the disease differs for everyone, with some experiencing mild or severe symptoms that relapse and return, and others facing a slow but continuous worsening in their conditions.
Symptoms vary for individuals — where one person may experience abnormal fatigue, another might lose muscle coordination. One might have slurred speech, another, hearing loss.
Because of its unpredictability, each day is an unknown.
“We talked in group about what’s the worst part about having MS, and we all agree it’s the unpredictability,” says Barniville, whose symptoms include heat sensitivity, fatigue and numbness in her legs and hands. “It’s hard for your family to understand when you have a bad day; it’s impossible for your employer to understand. My kids couldn’t understand when I couldn’t drive them to basketball because I couldn’t feel the gas or the brake pedals ... you just deal, day to day. You just have to see what the day brings.”
And you appreciate what you have while you have it.
“Everything becomes very immediate,” says Conant. “You may make plans for the future, but you don’t know until that day if you’ll be able to do it. You just have to slow down.”
While there are drugs to help slow the course and symptoms of the disease, there is no cure yet.
But there will be, soon, if fund-raiser Virginia Phillips has anything to do with it.
“We are so close, so very close,” says Phillips, whose mobility in her left leg has been most affected by the disease, along with the ability to focus on multiple tasks. “That’s why we work so hard to raise funds for MS.”
Phillips, who used to travel the world finding antiques for her business, has found her lifestyle frustratingly curtailed.
But she’s coping. And fighting.
“I’m a pretty calm person,” she says. “But I’m not one to lay down and give up. I’m working hard to stay mobile and stay involved with what I love to do, my design, my oil painting ... they’re a motivation for me to get up in the morning when I could be lazy.
“I want to walk, play tennis, ski, dance, do all the things I always
did with not a thought. This is a challenge. And I’m not backing down.”
Copyright © 2003, Post-Tribune