"People will say, "Well it's really wonderful that you're totally recovered, and I want to say, `I need you to know that everything I say to you, I have to work to find every word,’" explains Mary Jane, who suffered a potentially fatal hemorrhagic stroke in September, 1996.

Like one-third of the 70 Aphasia Center participants, Mary Jane has mild aphasia. Though they may appear "normal" to friends and family, people with mild aphasia continue to struggle with word-finding, spelling, reading, and writing. For many, telling jokes, copying phone numbers, or balancing checkbooks remain exhausting tasks. But the energy expended to keep up with these daily language demands may go unnoticed by others.

"People with mild aphasia have friends and family that do not always understand what they're trying to deal with," said Dr. Roberta Elman, president of the Aphasia Center. "Most of the problems that mild-to-moderate aphasia causes are problems that we all have, except when you have them with aphasia, you have them all the time. We all have word-finding problems, we all have tip of the tongue experiences, so we understand it at some level, but people with aphasia are living it almost every minute," she said. "I think a lot of the times the deficits that these people are experiencing are really downplayed and that's very frustrating to them."

To make matters worse, many people with mild aphasia are denied any kind of therapy by their health insurance companies because they have been deemed "functional," or no longer in need of care. "Even with mild aphasia, you can have impairments that can radically alter life as you knew it," said Dr. Elman. Because people like Mary Jane are less likely to qualify for traditional therapy, "they are desperate for a place to come to work on their conversational skills, their reading and writing skills, and to discuss the psychosocial aspects of what they're all experiencing."

To make matters worse, many people with mild aphasia are denied any kind of therapy by their health insurance companies because they have been deemed "functional," or no longer in need of care. "Even with mild aphasia, you can have impairments that can radically alter life as you knew it," said Dr. Elman. Because people like Mary Jane are less likely to qualify for traditional therapy, "they are desperate for a place to come to work on their conversational skills, their reading and writing skills, and to discuss the psychosocial aspects of what they're all experiencing."

A Place to Remember
The Aphasia Center is one place Mary Jane, an 18-year Moraga resident, can count on finding people who understand what it's like to have aphasia. "I think it's important to share with everyone," she said. "It's a place I can go every week that helps me remember what happened to me and I think it's critical to remember, because then I can be grateful for where I am today."

And she has come a long way. Though Mary Jane shows few outward signs of having had a stroke, her cerebral hemorrhage was so severe that a priest was called in to give her last rites. Her initial problems with auditory comprehension and nonsense word substitutions have given way to difficulties with spelling and word-finding. "I know I've been incredibly blessed, and I know people will say, `well, not everyone's that lucky,’ but I don't know how much is luck. I also know I worked hard," said Mary Jane.

Getting Educated
Education is really the key, says Mary Jane. It's the best way to help yourself and others understand the issues faced by people with aphasia. As Christmas gifts last year, Mary Jane gave copies of Helen Wulf’s book, Aphasia: My World Alone, to her family members and friends. "I have no clue if anybody ever read it, but at least they know that somebody has written a book on this word 'aphasia'," she said. " I think it validated that what I was saying about aphasia was correct... at least they know that I wasn't just imagining."

Education is also at the center of Mary Jane's personal philosophy of recovery. Since her stroke, she's tried everything she could find that might help her--she’s taken courses at community colleges, attended group sessions, reading and writing classes, and hospital-sponsored lectures. Some things worked and others didn't.

The important thing, says Mary Jane, is to test the waters and see what's out there. "I think it's just being cognizant of every opportunity and taking advantage of it to see if it clicks for you, not that everything does," she said. "I interviewed at some other courses and other schools and if it didn't feel like it worked, I didn't stay there, I just kept moving on and looking for the next thing that could help."

At the Aphasia Center people with aphasia can pick and choose the kind of classes or groups that may work for them. "What we're trying to do at the Aphasia Center is to provide support, a community and resources for people, but they decide which resources they're going to engage in or take from us. We're not the ones deciding," explained Dr. Elman.

One class that worked for Mary Jane was the reading and writing course she took at the Aphasia Center this past Spring. Once a week for ten weeks, Mary Jane and three others met with Dr. Elman, who has a doctorate in speech and language pathology. They started reading short passages and did homework each week. At home, participants read and then wrote about newspaper articles.

For Mary Jane, the course was a great success. Before the class started, she had virtually given up on reading. "I think sometimes we tell ourselves we can't do something and then guess what? We can't do it," said Mary Jane. "After that class I started to read and now I read as much as I want. I read whenever I want and I'm reading a lot." For a while she was reading a novel each week.

Confidence is Key
Both Mary Jane and Dr. Elman point out that confidence may be what helps some people turn the corner and regain skills they thought were gone for good. Mary Jane suspects that much of her trouble with reading may have been due to a "psychological hang-up." She wonders if that doesn't happen with a lot of people. "They think it's too hard, that they can't do it and so throughout the recovery process they may not recognize that that statement changes. What doesn't work for you on day one (after a stroke) may not still be operation on day seven."

Classes help build skills and confidence, says Dr. Elman, who, with the help of speech-language pathologist Ellen Bernstein-Ellis, M.A., directs reading and writing classes for people with mild, moderate and severe aphasia. "A lot of it is practice, but some of it is confidence building. And that's what a lot of our groups are for. When Mary Jane comes back to the group and says she's reading, that gives other people the motivation to say, `Well, she can do it, I wonder if I can?’"

Moving On
Mary Jane, like many people with aphasia, is working to strike a balance between the time she devotes to recovery and the time she spends on other non-rehabilitation activities. Five months before her stroke, Mary Jane was a newly married, newly retired, active, healthy woman in her 50s. She had none of the risk factors for stroke. (Dr. Elman points out that roughly 50 percent of the people who come to the Center after having had a stroke, did not have any of the typical risk factors--they were non-smokers, active, not obese, not diabetic, and not hypertensive).

Having a stroke put a dent in Mary Jane's plans for the future. "I had lots of changes and I really hadn't been able to take time for those changes because of the stroke. Now I'm taking time to basically learn about my new life. So I've told myself that I'm going to start doing more life-oriented things," said Mary Jane.

"At some point, I think each person that experiences aphasia has to come to terms with when it's time to stop being a patient and when it's time to start being a person again," agrees Dr. Elman. "With aphasia, potentially, you could devote all your waking hours to working on the language deficit you may have. But at some point it seems healthy to decide to move on with your life, that you need to live life with aphasia. Mary Jane is becoming comfortable with some of the remaining language deficits and that she has realized that she can continue to live a full life even with those deficits. Life does not stop with aphasia."

But recovery and living life are not mutually exclusive. "I think that people should be aware of the fact that even if they're not doing rehabilitation work that recovery is taking place," said Mary Jane, who still attends Aphasia Center groups and classes.

Finding Meaning
For Mary Jane, moving on with life has also meant finding ways that she can give back to the community. Recently, she started taking her Golden Retriever, Chelsea, to visit residents of a local nursing home. "I tell you, when they see Chelsea, when we come into that place and see the smiles that come from these people, it's just amazing," says Mary Jane.

Taking Chelsea to the nursing home is a source of strength for Mary Jane and it helps her feel more connected to her own mother, who is in a nursing home in Missouri. Volunteer work fits into her recovery philosophy.

Finding something that you love to do, finding a purpose in life is therapeutic and vital for everyone, not just people with aphasia. "For Mary Jane, she's able to share the altruism that has probably always been part of her personality," said Dr. Elman. After having a stroke, many people are forced to give up jobs or volunteer work that they had been doing, but at some point, says Dr. Elman, it's important to find purpose again. "I think for everyone, whether they have aphasia or not, all living people need to have a purpose in life. It's important for everyone's self-esteem."

Talking about her volunteer work is one way that Mary Jane inspires other Aphasia Center participants. "She provides a wonderful role model for how one moves forward after aphasia. Especially given some of the volunteer work she's begun to do," said Dr. Elman. "That really serves as an inspiration for many people in the group to see that they could start to do some of these things again, things they may not have considered themselves."