Productivity.

LIVING WITH MULTIPLE sclerosis can directly impact a person's sense of being a productive member of society, but when the playing field changes, so do the rules. This is a view held by many of us who deal daily with the facts of living with MS, and by some of the health-care professionals who treat us.

Contributions to the universe

"If someone has defined productivity for you as gainful employment, my comment is, that's only one definition," said Gail Hartley, RN, MSN, FNP, a senior MS nurse who is assistant to Dr. Norman Kachuck, director of the University of Southern California's Multiple Sclerosis Comprehensive Care Center. "My definition is based on how one uses one's time and talents. What you are doing for the benefit of others, for your family, or for important issues in the community is probably a better definition. There are a lot of people who are making money who are not very productive."

Carolyn Roberts, PhD, a practicing psychologist, has lived with relapsing-remitting MS for 22 years. "To me, productivity simply means making meaningful contributions," she said. "I believe our culture defines that as contributions through work. But each of us eventually has to find meaning when our bodies--through aging, illness, and/or disability--no longer allow us to work. This is an individual quest and one that I cannot define for others. Having said that, I think that it's helpful to define productivity as the ability to make meaningful contributions to the universe, within our limitations."

Being productive in a new career

Lynn Willmott was diagnosed in 1985 with relapsing-remitting MS and, among other symptoms, nagged by aversion to high temperatures. The trained chef literally had to get out of the kitchen because she could no longer stand the heat. The epicurean loss was to be the MS community's gain. Lynn Willmott decided to retrain.

"I liked counseling, and 8 years later I had my master's in social work from UCLA. I'm now collecting `hours under supervision' to get my license in clinical social work," she said. Now the programs manager for Emotional Health at the Southern California Chapter of the National MS Society, she runs 9 support groups and 26 self-help groups, and trains 30 peer counselors, as well as the licensed therapists who work part time for the chapter.

"Say I can't do it and I'll prove you wrong," she says today

People with MS often retrain for a more feasible kind of work, but it is not the answer for everyone.

Being productive--but unpaid

Allan Day, who has lived with secondary-progressive MS for the past 16 years, endorses the idea of getting a task done in small pieces. "I'll do anything and everything that will help get a job done," he said. "I used to enjoy the challenge of accomplishing things as efficiently as possible. Now, if a thing gets done, okay, that took a while. What's next?"

What's next seems to be on his agenda constantly. After leaving his job at the University of Southern California, where he was part of a team responsible for occupational safety and health, the 46-year-old Day has kept going and going and then some.

"When I first left my job on disability, I thought, `Wow, a never-ending vacation.' That feeling lasted about 2 days," Allan Day remembered. "Then I realized I had nothing to do and all day to do it. I thought about volunteering right away What a great opportunity to concentrate on accomplishing goals important to me! And what would be more rewarding than to fight back against MS?"

He has served the National MS Society as a member of the strategy team for the national Framework for Volunteer Program Development; he was an active member of the National Program Advisory Council for 2 years. He is also a member of the Southern California Chapter's Board of Trustees and serves on 4 important chapter committees.

"I had always liked my position at USC," said Day. "It was interesting and different every day. However, when I compare my old job to my volunteer activities, I realize how much more fulfilling volunteering can be. I never realized the feeling of satisfaction from any of my paid positions that I do now from volunteering."

Jane Harmon of Carrolton, Texas, went from a hobby to a true avocation. She feels that it has enhanced her life to a tremendous degree.

"I was a member of the Dallas Caged Bird Society, and we began to hear horror stories of birds that were abused or neglected. We saw a need for a rescue program." In 1990, she founded Project HAVEN to take in and find good homes for exotic birds. She was its first director.

"I have a lot of forced leisure time. I found pleasure in the birds, basically smaller ones like finches and canaries. I still find pleasure in the texture of their feathers. The species even smell different," she noted.

The senses of smell, touch, and hearing have played a greater role in her life since 1995, when she lost her sight as a result of cataracts incurred while her MS was treated with steroids. These days the former occupational therapist deals with spasticity, cognitive disabilities, and her most disabling condition--fatigue.

"I'm able to look back on how much I have learned about aviculture," Jane Harmon said, "and this is a tremendous encouragement to me when I get overwhelmed by my cognitive disabilities.

"I've been able to recognize that the birds we rescue can be an important part of the lives of people with disabilities," she said. "The birds are good for people and people are good for the birds.

"You know, if you have diabetes and you have a cockatiel with diabetes and the bird wakes up singing despite the diabetes, it's harder to feel sorry for yourself." She added, "My skills as an occupational therapist have prepared me to provide a good home for birds with behavioral, emotional, or physical problems.

"I have a choice," Jane Harmon said. "I could lie in bed feeling sorry for myself, but taking care of birds is a lot more fun."

Defining "a way of being"

Psychologist Carolyn Roberts pointed out the basic problem: "When work stops, many of us have to struggle with `Who am I?' If one's identity is in one's work, a person has to build a new identity. That involves grieving the losses we've had because of the MS. We don't want to do that grieving, but if we don't go through it, the emotions associated with our losses are often too debilitating to allow us to create a new life.

"Eventually, limitations can be integrated and even embraced. Each individual can create a new way of being in the world and of making contributions that are meaningful. Even if we are totally incapacitated, I believe we can create loving thoughts, thoughts to bring good into the world. At one time, I was bed-bound and I meditated 4 to 5 hours a day. I think that contributed to a greater consciousness, not just of myself, but of the world."

Lee Shaughnessy is patient education coordinator for Colorado's Rocky Mountain Multiple Sclerosis Center. "Speaking as a member of the larger community," she said, "I think there's a call for the rest of us to take advantage of the talents of people who have limitations. We need to figure out how to put those talents to use. It's our loss if we don't."

Linda Longo-Muth has been a full-time artist since MS ended her art teaching career in 1987. Her chosen subject, light moving through glass, captures the unexpected direction her life has taken.

Al Tainsky was diagnosed with MS in 1989, 3 days before taking the Associated Press test for employment as a globe-trotting reporter. He subsequently decided to concentrate on the disability scene--writing, editing, and publishing for newspapers and magazines. Four national writing awards later, he continues to work with the use of his one functioning arm.