More MS news articles for April 2001

Kat's fight

http://www.newscoast.com/2news.cfm?ID=44649

posted 04/28/01
By JAMES ROLAND
james.roland@herald-trib.com

Kathleen Wilson bounced on her grandmother’s bed at the age of 5 and started a conversation with God.

During that dialogue, when the dark-haired little girl leapt as close to heaven as she could, Wilson learned that a special mission awaited her.

“All I knew was that when it came along, I would know it,” says Wilson, 42, in her Sarasota office/art gallery.
That enlightening moment, when springy young legs allowed her momentarily to defy gravity, remains a happy memory despite a sudden turn in Wilson’s life journey.

In 1995, “Kat” Wilson was living a dreamy life as a photographer working in Athens, Greece. One day, she noticed a numbness, a tingling sensation in her right leg. During the next few weeks, the numbness gave way to pain and within a month, she was confined to a wheelchair.

She returned to the United States, where she was diagnosed with multiple sclerosis, and eventually moved into the Sarasota home of her parents, Vance and Claire Wilson.

“I had this major attack and my whole life was washed away,” Wilson recalls. “The first three months were especially difficult. At 3 a.m., you think, ‘What am I going to do with my life? I don’t even have a life.' So I started surfing the Internet."

Relatively little information was available online six years ago about multiple sclerosis, or MS, a disorder of the central nervous system that affects sufferers in a variety of ways.

The few chat rooms and message boards posted offered little comfort.

Then her life's calling manifested itself: Create a place on the Internet where people with MS can find answers to their questions and contact others facing the same challenges.

The result is MSWorld Inc., a nonprofit corporation that operates a Web site that hosts interactive conversations on a variety of disease-related topics and provides information and links to other MS-related sites. The Web site can be found online at www.msworld.org.

A couple of years ago, Wilson moved her office out of her home and into the cottage-like gallery she keeps in the Sarasota artists' colony of Towles Court.

"When I started my first chat room, I was fulfilling some of my needs," Wilson says. "I need information. Where is it? I need positive people. Where are they? It was selfishly based, I suppose, but in my heart I knew it would help people."

Among the first people to benefit from Wilson's vision was Susan Zachary, a Texas mother of three grown children. Zachary, now MSWorld's vice president, also had discovered a new world of communication and information via the Internet when she went looking for answers about MS.

She was one of a handful of people in Wilson's first online chatroom.

"The minute I got in the room, it was like coming home," Zachary says. "I was talking with people who understood what I was saying. I could talk freely."

Zachary has since assumed many of the technical and Web support duties of the organization, though she and Wilson readily admit they could use the help of anyone willing to volunteer their Internet and computer expertise.

"I go to bed thinking about MSWorld, and when I wake up I can't wait to get working on it," Zachary says. "It's my world. I handle the techie stuff, but Kat is really the visionary. We always focus on what people can do, not what they can't do. I have a great deal of respect for Kat. I'm older than she is, but she's taught me a lot about growth."

Wilson's vision of MSWorld's future should become even clearer during the next few weeks, as the National MS Society looks to make MSWorld the society's official chat site.

Nancy Law, vice president of client services for the NMSS, says a strong Web presence can only make life easier for people with MS.

"I think the Web is becoming one of the main vehicles with which people communicate with others who have MS and get important information," Law says. "Fatigue is a big factor for people with MS. Getting out and meeting people can be difficult, so people often feel isolated ...

"We're very impressed with what we've seen with MSWorld. They run a good ship. They train all their chat administrators and they really look out for their members," she says.

MSWorld.org already receives more than 100,000 visits monthly, and teaming with the nation's largest MS organization can only boost its exposure.

"We're thrilled," Wilson says. "We want the exposure. We need the funding to do what we want to do."

Beyond the mission

Besides an upbeat and helpful online presence, MSWorld's mission includes creating Life Enhancement Grants (L.E.G.S.) to allow people to enjoy themselves a little more.

"We want to ask people, 'What would you like to do?' Have lunch with your friends every Friday? I think that would be an appropriate grant request," says Wilson, who sees the simple joy, yet extraordinary challenge, in weekly lunch dates with friends.

"We're all about enhancing the lives of people with MS," she adds. "We're into maxing the joy out of every day."

If MSWorld can provide grants to buy special scooters or transportation for outings, then its mission is being fulfilled, Wilson says.

Besides helping others with MS, Wilson has an unwavering belief in the power of online support to bolster the mental health of people with any disabilities or challenges in their lives.

While earning her master's degree in psychotherapy at the University of Sarasota, Wilson made an independent project of her thesis that online support is as important and effective as traditional support groups.

The scoffing that greeted her theory reminded Wilson of the staunch unwillingness of the traditionalists at the Rhode Island School of Design, where she earned her bachelor of fine arts degree in 1981.

"I wanted to do color photography and people said, 'No, that's not real art.' Well, yes it is," she says. On the far wall of her office/gallery hang photos of shimmering and watery reflections. Next to them are empty spaces, where pieces of Wilson's work recently hung.

"I have some blank spaces up there, but that's good," she says. "That means they're selling."

Though MSWorld remains Wilson's highest priority, she plans to return to photography. She recently lugged 15 pounds of Nikon camera equipment to a store and sold it, crying at the thought of giving up her favorite artistic tool, yet laughing at the ridiculousness of trying to use the heavy equipment in her condition.

She purchased a lightweight camera and lens.

"I know I still have a lot of pictures to make," says Wilson, who can still drive but uses a cane to walk.

There is a burning sensation in her right foot that never subsides. Only through the distraction of work, art or conversation can she ignore it.

And unless you ask her, you're not likely to hear a single complaint. She smiles easily and tends to steer conversations about pain and discomfort into discussions about promising treatments and finding ways to make life happier for those around her.

"She's a very positive person, which is not an easy task given her situation," Law says. "She has clearly taken a lemon and made lemonade to use an old cliché. But she has taken something hard in her life and turned it around to help a lot of people."

A life defined by rediscovery

Perhaps it was an idyllic childhood that gave Wilson such a sunny perspective.

With a father from the Northwest and a mother from Connecticut, young Kathleen spent most of the year in Spokane, Wash., and summers in Cape Cod. At age 12, she cried and cried when her salesman father moved the entire family to New England year-round.

But an occasional trip to Europe and new friends at her Connecticut prep school made the adjustment a little easier.

"How could I complain?" she says, laughing appreciatively at the advantages she enjoyed growing up. "My art teacher said I should go to the Rhode Island School of Design, but that didn't seem right. I looked at Vassar and Smith, but I wound up at Kenyon College (Ohio) for a semester."

Wilson again was advised to develop her photography skills and artistic talents at RISD in Providence. She finally decided to take the hint and found it to be an inspiring education.

Her talents allowed her to work creatively and successfully in business.

Wilson landed marketing and advertising jobs in California, Washington and Oregon, often winning regional and national awards for her creative campaigns.

These days, Wilson is her own boss. She has a client base that feeds off both her energy and her hard work. Tapping her psychotherapist training, Wilson readily aids frightened and frustrated newcomers to the MSWorld chatrooms with a special kind of counsel.

Rather than speak in terms of "recovery," Wilson thinks about finding her mission and talks to others who have MS, using the phrase, "rediscovery."

"I learned that I have courage," she says matter-of-factly. "I learned that I'm truly creative in terms of my place in the world. We grow from challenge. Our motto is, 'Wellness is a state of mind,' and I absolutely believe that."