In many ways, Mary Walia is a typical 18-year-old — she goes to high school, loves adventure, and has a keen sense of humor. She is passionate about helping others and wants to use her public speaking skills to continue to reach out to people in need after she graduates. What is not typical about Mary is that she has lived almost half her life with a traumatic brain injury. She uses a wheelchair and has limited use of her arms, restricting the tasks she is able to do freely. People don’t always listen to what Mary has to say because her speech is slow and sometimes difficult to understand. It’s ironic, Mary says, “ … because even though I speak slowly, I think quickly. That means I have to be the patient one with others.”
Although her disability may be what people see immediately, the things that really stand out about Mary are the persistence, insight, and humor she and her family have woven into their daily experience. Mary’s curiosity and zest for life have impressed her friends and family since she was a toddler. Her mother, Karen Davis Walia, tells stories of “very-Mary-moments” in which her daughter is simultaneously astute, genuine, and comic. It’s easy to admire the energetic girl who seems well on her way to becoming a community leader or maybe a performance artist.
“People think because of my slow speech that I am not intelligent, or they treat me like I’m younger than I am. They are uncomfortable with what happened to me and assume I don’t understand things — although I do, very well. I know a heck of a lot! Maybe more than I should!” says Mary Walia
Life changed abruptly on a hot July day in 2002. Nine-year-old Mary was hit by a car as she crossed the street to get ice cream, just two blocks from home. Her injuries to her brain and body were catastrophic. Mary had diffuse hemorrhaging in the space between her brain and skull, a fractured femur, a bruised lung, and a possible spinal cord injury. She was resuscitated before being airlifted to the hospital in a coma. Against all the odds, Mary survived, and she has been working ever since to get better, day-by-day.
Karen has been Mary’s caregiver and advocate through every transition: from ICU to rehabilitation to home to school. One particularly wise doctor summed up her role when he told his medical students, “Moms know first.... Parents know their children better than you ever will, and your protocol needs to reflect that.”
As Mary worked to regain her speech and motor skills, Karen dealt with an array of challenges to adapt to their new lives. These included finding an accessible home and a new job and fighting seemingly endless battles with the health insurance company (sometimes representing herself in court). An unexpected challenge was learning to navigate the special education system. Though she had years of experience as a high school teacher, Karen often felt that she had to become the “difficult parent” as she had to fight with the school district to get Mary’s needs met.
Though she was placed in special education under the correct eligibility category, people who worked with Mary had no formal training in brain injury. She was the only student in her school who needed both physical support and regular education academic classes. Often her assignments were not modified to accommodate her physical needs. More hurtful, people who worked to support Mary’s physical needs did not always recognize her cognitive capacity or realize that she remembers what it was like not to have disabilities. It frustrates her that “people think because of my slow speech that I am not intelligent, or they treat me like I’m younger than I am. They are uncomfortable with what happened to me and assume I don’t understand things — although I do, very well. I know a heck of a lot! Maybe more than I should!”
Describing how they overcome difficulties like these, Mary and Karen both say that one of their biggest assets is taking a day-by-day approach to life, especially embracing opportunities to laugh. Seeking out irony buoys daily events and can help them get through situations where they have little control. As Mary dryly noted, “Sometimes we see strange things — we joke around.”
Listening to Mary and Karen talk, you can tell how much humor factors into their patterns of thought. Her mother recounts, “When Mary got her new power-chair — I’m really trying hard not to call it an ‘electric-chair’ — we were out on the sidewalk and our neighbor says, ‘Oh, Mary, be careful, you’ll get hit by a car!’ and Mary says, ‘Been there, done that.’”
Mary’s mother, Karen Davis Walia explained that she and Mary decided a long time ago to see the funny side of daily events and noted that laughing “helps everyone else relax, too.”
Asked why they use humor as a coping tool, Karen explained that she and Mary decided a long time ago to see the funny side of daily events and noted that laughing “helps everyone else relax, too.” This approach can help groups work together more smoothly and can encourage people to collaborate to solve problems.
For mother and daughter, taking life one day at a time and learning to laugh go hand-in-hand. As Karen says, “It beats crying over it. I think we’re lucky. We’re no saints — we have our up and down days — but on the whole, Mary has a very good ability to look at her bulletin board and the pictures on her wall and say ‘I’m happy. [If I hadn’t had a brain injury], I wouldn’t have swum with the dolphins. I wouldn’t have met the amazing people I’ve met or learned some of the things I’ve learned; it hasn’t all been bad.’”
Mary describes her feelings in the text of a speech she has written: “I get asked a lot about what life is like, since I was once “normal.” Sometimes life is kind of difficult from my perspective, but more or less, it’s just what happened. I can’t change it now. I can’t go back for a ‘do-over,’ so I guess I’ve just got to deal with it. If I think about my life being sad or bad, I’ll never get anywhere.”
This attitude carries over into the talks that Mary and Karen give to promote brain injury awareness and raise support for people with disabilities. Because Mary’s physical condition may limit the kinds of work she can do, she and Karen have discussed making a career out of presenting and answering questions to help others learn not to fear people with disabilities. After high school, Mary wants to help people “in any way that doesn’t hurt me or them.” She gravitates toward the idea of helping people with brain injury learn to talk again.
Many of Mary’s presentations are part of school units involving issues of disability and ethics, and she can have a profound impact on the people who hear her. Recently, she was asked to come back to a high school classroom because students still had questions after her first presentation. Told they could “ask anything,” one of the students wanted to know why Karen hadn’t “pulled the plug,” and directly asked Mary, “Are you sorry that treatment continued?” Mary said no. When asked “why?” her response rattled the room “Because I’m a young woman with a lot to give to the world, and the world has a lot to give me yet.”
“I get asked a lot about what life is like, since I was once ‘normal.’ Sometimes life is kind of difficult from my perspective, but more or less, it’s just what happened. I can’t change it now. I can’t go back for a ‘do-over,’ so I guess I’ve just got to deal with it. If I think about my life being sad or bad, I’ll never get anywhere,” says Mary Walia.
In the nine years since Mary’s injury, she and her family have found several resources and organizations in Pennsylvania that have helped them live life to the fullest. These include:
- Camp Cranium is a non-profit summer camp with a 1:1 camper to counselor ratio. Every year, Mary looks forward to tailored activities such as zip-lining rock-climbing along with the opportunity to meet other youth with brain injury without feeling “different” or self-conscious. http://www.campcranium.org/
- The Brain Injury Association of Pennsylvania (BIAPA) offers support, education, advocacy, and research to improve quality of life for people who have experienced brain injury and their family members. http://www.biapa.org/
- The BrainSTEPS program works to make sure that those who provide educational support to children with brain injury have a good understanding of the effects of the injury, the resulting challenges, and supports and interventions that will help these students achieve educational success through graduation. http://www.biapa.org/atf/cf/%7BE07F6363-A589-41AA-B9C1-990FEE288F44%7D/Fact_Sheet_rev_08192008.pdf