The first thing you notice about Shirley Maltby is her elegant British accent and keen intelligence. A mental health counselor at a community college and a health clinic in Exton, Pennsylvania, Maltby is building up a private practice. The former Londoner has two daughters and a devoted husband.

She also has multiple sclerosis.

"I want people to know that this is a fact about me, like the fact that I have green eyes," Maltby says about her illness. "But I don't want the disease to be the first thing people think about me."

Maltby, 55, was diagnosed with multiple sclerosis (MS) two years ago. MS is a chronic disease that affects the central nervous system. It is thought to be an autoimmune disease in which white blood cells and antibodies attack the body's myelin, the fatty coating that surrounds and protects the nerves of the brain and spinal cord. This leads to damage of the protective sheath and, eventually, to the nerves themselves. "Multiple sclerosis" literally means "many scars." The location of the damage determines which parts of the body are affected, and varies from patient to patient. It is usually diagnosed with the help of an MRI scan of the brain.

In Maltby's case, it took doctors a year to definitively diagnosis the disease. She initially went to the doctor because of an eye problem: In March 2001, she woke up to find that the vision in her right eye was partially obscured. "I went to the optician first because I thought it had something to do with my contact lenses," Maltby recalls.

It turned out that she had optic neuritis, an inflammation of the optic nerve. Optic neuritis can have a number of causes, and it is one of the most common symptoms of multiple sclerosis. The condition usually clears up on its own, but Maltby has never fully recovered the vision in her right eye. She now recognizes that there were other symptoms of MS, including a prickly sensation in her left leg and severe bowel problems.

Later, Maltby noticed other peculiar physical changes: After working out at the gym, her legs felt wobbly and she had trouble walking down the stairs. On outings with her husband, she found that after walking for about 20 minutes, her left foot would begin to drag.

Although Maltby knew that MS was a possibility, when she finally got the diagnosis, the news was devastating. "I was terrified, completely panicked," she recalls. "I'm not a religious person, but the injustice of it obsessed me. I said stupid things like, 'Why is this happening to me? I've never knowingly hurt anyone in my life. I've always been a good girl.' "

Until that time, everything Maltby knew about MS was deeply disturbing. The mother of a good friend in England contracted the disease and became disabled very quickly. She ended up taking her own life in an assisted suicide. Maltby had closely followed the career of Jacqueline du Pré, a classical cellist whose music she loved. Du Pré was diagnosed with MS when she was 28, and her musical ability declined rapidly. She died at 42 in 1987.

"Everywhere I went after my diagnosis, I noticed people in wheelchairs. Just like everyone else, I didn't notice these people until I realized I might one day be in a wheelchair myself," says Maltby. "Since then, I've learned that that is not the inevitable consequence of MS. But I didn't know it at the time."

In fact, according to the Multiple Sclerosis Association of America, only 25 percent of people with the disease use a wheelchair or remain in bed because they are unable to walk.

But when she received her diagnosis, doctors told Maltby what most MS patients hear: They didn't know how fast her disease would progress, or exactly how she would be affected. An early MRI revealed that the disease had done a considerable amount of damage already. "The first doctor I saw said he couldn't believe I was doing so well, given what he saw on the MRI," Maltby says.

Maltby was scared and angry at first, but as her shock receded she realized that she needed to educate herself about the disease and its possible consequences. "I'm the kind of person who always wants to know the 'why' of things," says Maltby. "I read everything I could get my hands on. This helped me, although it added to my fears as well. There are some awful symptoms out there.

"The fact that I've been okay is reassuring. At first I would take my cell phone everywhere, because I was afraid that I would collapse and not be able to get up. But nothing like that has happened."

She has, in fact, had some nasty falls. Once, she fell flat on her face and broke her nose. She assumes that the falls are related to her MS, but has no way of knowing for sure. Two years after her diagnosis, Maltby can still walk, although she tires easily. She uses a wheelchair if she is going to be out and about for a long time -- if she is in a museum, for instance, or a large department store. Her biggest complaint is fatigue, which is common in people with MS. "I feel like I have to drag my body around," she says. "And I don't feel sharp. It seems to dull the brain."

Maltby's condition has been hard on her family, but everyone has rallied around her. "My husband has been very supportive," says Maltby. "He comes with me to the hospital for tests, and he gives me my shot because I can't bear to do it. He gets upset because the shots sometimes hurt a great deal. I know he worries, but he doesn't talk about how my illness could affect our future. He throws himself into his work, and I think that is his way of dealing with it."

Her eldest daughter, Zoe, 21, attends college at Pennsylvania State University. Lauren, 18, lives at home and goes to community college. "When I told the girls, they were very matter-of-fact, as if it wasn't a big deal. Over time, they've both expressed more fear about it. Lauren says she would be really sad to see me in a wheelchair. And Zoe worries, I know. I also assume there is anger [on Zoe's part] -- anger that I'm not able to run around with her like I used to. And anger that our lives have been affected by bad things that she assumes don't happen to other people."

Still, Maltby says that her MS is now just a fact of their lives. "We seem to just carry on. It's like, oh yes, this is what it is. And we just carry on."

Maltby urges people to avoid isolation during their first months after diagnosis. "What helped me was to talk about it as much as possible," she says. "It is good to go to a counselor, or a support group. There was a nurse at work who I talked to a lot, and I was in a women's support group. It is important to find someone outside of your family to confide in, because you want to be able to express everything you are feeling, and this may be hard for your partner or your children to hear. I didn't want to talk to my husband about all my feelings, because, really, I felt my life was over."

Work has been extremely important for Maltby, because it keeps her active, and she knows she is making a contribution. She works with MS patients in one of her counseling jobs. "There is a lot of depression among people with MS," says Maltby. "And relationship problems are common. There are often issues around sex. I know the people I work with find it helpful that I have MS too. People with the disease complain that no one knows how they are feeling. Because how do you explain the fatigue, for example? How do you quantify it? Someone else who has MS can understand that."

MS has become the focal point of her counseling work. At the time of her diagnosis, her girls were grown, her husband was busy with his career, and she wanted to get back to work too. "MS presented a challenge, and a new focus for my work," she says. "It gave me a way to contribute."

But Maltby cautions that it takes time to get to the point where you can see anything positive about life with a chronic disease. The initial feelings of fear and anger and disappointment subside, but they never go away completely. MS patients who have a relapse, lose their mobility, or experience a crisis that has nothing to with their condition will often find themselves flooded with the same feelings all over again.

Maltby has her down times too, of course, and her share of worries about what the future holds. "I try to help people to see the positive, because really, there isn't a choice, is there? MS is a reality of life for some of us, and it isn't going away. And it's true: There are good things that come out of this, and it makes you stronger. But I still wouldn't wish it on anyone."

-- Connie Matthiessen is a San Francisco-based writer.

References

First published December 12, 2003
Last updated October 31, 2007
Copyright © 2003 Consumer Health Interactive

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