by Rachel Mayan
Determination isn’t something we’re all born with. In fact, if we face few trials in life, we may never know if we possess it. But for individuals like Ewa Okla, determination is not only a life skill, but a muscle she exercises daily. Faced with obstacles even before she was born, Ewa is a model of perseverance, light, and a life lived to its fullest potential.
Ewa – pronounced like “Ava” — was born with Arthrogryposis Mulitplex Congenita, also known as AMC. AMC is a purely physical condition that affects one in 3,000 people. It can be described as a muscle weakness that appears in different ways depending on the person.
AMC occurs in the womb when an excess of fibrous tissue forms over a joint, causing it to become hooked or curved. AMC can also occur when tendons and ligaments don’t adequately stretch in the womb, which causes muscle restriction. Children born with AMC may have muscle atrophy, nervous system challenges, or even paralysis of certain limbs.
Some people may be affected in one limb, both arms, both legs — in Ewa’s case, all four of her limbs are affected, causing her to be in a wheelchair.
Despite her inability to walk and independently complete tasks like getting out of bed and feeding herself, Ewa is determined to reach higher and higher standards of excellence, and she has accomplished more in her 34 years than many people do in their lifetime.
Ewa and her family moved from Poland to the United States when she was just two years old. Her father left behind a job as a doctor and her mother, a nurse, because the only hospital who knew anything about AMC at the time was A.I. DuPont. They wanted to give Ewa the best possible care that they could.
Over the course of several years, Ewa underwent 10 major surgeries, ranging from her feet to her back to her spine. She spent a lot of time in physical therapy — one of the best forms of care for people with AMC, as it challenges the muscles to do what they may not do on their own. Physical therapy was a great aid in getting her strong enough to walk for exercise with the support of braces, but she always used a wheelchair to get around. Though she had physical differences from her older two sisters, her parents treated and expected of her just the same.
“My family didn’t treat me like I had a disability,” Ewa recalls. “They’d say, ‘no, you can do this, and if you say you can’t, then you have to do it another way.’ It was never, ‘let me do this for you.’ I always had to figure it out.” Ewa’s family’s support gave her the confidence that she could do anything and the drive to not just overcome her disability, but surpass it.
She remembers even her sisters pushing her to only accept the best from herself. “My middle sister had no sympathy,” Ewa laughs. Ewa’s sister didn’t let her wallow over challenges, and she held Ewa to a high standard.
“I was scared to bring home a B to my sister, not to my mom and my dad,” Ewa says. “She’d tell me I have to get all A’s, and I’d say, ‘but you don’t get all A’s,’ and she would say, “but you do,” and she was right. I had to go above and beyond to be listed on the same level as everyone else.”
Excelling and going beyond the norm became a part of Ewa’s personality at a young age. She felt it necessary to be the best not only to disprove perceptions, but also to make people take her abilities seriously. Without getting to know her, many people misunderstand her.
”People will assume I don’t work or don’t do anything with my life,” Ewa says. “Random people at stores will say, ‘I’m so sorry, God will help you,’” she says. “It will be random, strange things. And I get it, people don’t understand differences, especially if they don’t live with it or know someone who lives with it.”
With the misunderstandings come assumptions of what Ewa is capable of. She has found that she’s often underestimated, which drives her to prove naysayers wrong. The biggest obstacle came with getting a job after completing her bachelor’s degree. She would have a phone interview that would seem to go great, and then she would go in for an in-person interview and the company would say that they had found another candidate. While laws exist to prevent discrimination against those with disabilities, it was always in the back of Ewa’s mind that her physical limitations played a factor in her being turned away. “I always wanted to be like, ‘just give me a week, and if I can’t do it, then I will leave happily,’” she laughs.
Some of Ewa’s friends who also have AMC have struggled with career opportunities, too. One friend of Ewa’s wants to be a counselor for troubled teenagers, but, as Ewa puts it, it’s a role that isn’t aligned well with people who have physical limitations. Should someone become violent, she wouldn’t be able to defend herself.
“I always try to tell her,” Ewa relays, “’you have to go above and beyond. Maybe one way doesn’t work or one specific path isn’t possible, but you have to try other ways. You have to make sure you don’t give up. You go through obstacles, and if you fail, don’t let those failures stop you from moving forward and making it a positive outcome.’”
Ewa was eventually hired as an accountant for Royal Bank of Canada. She stayed there for two years until she realized she didn’t love crunching numbers all day long, though she loved the field. She moved on to Cigna, where she was able to pursue higher-level positions over the course of nine years and even use her fluency in Polish to talk to doctors in Poland and resolve issues. She moved to MetLife a little over a year ago, where she now works.
All while climbing the career ladder, Ewa was also earning multiple degrees. She holds a bachelor’s degree in accounting, a dual master’s in HR and finance, and a doctoral degree in organizational management. Not only does she work full time, but she is also an adjunct professor at Wilmington University and currently tutors 11 students in middle and high school math. “I work a lot of my life,” she laughs.
Former student of Ewa’s and HAC Customer Service Director, Jordan Biscoe, notes that “Ewa’s passion for learning has turned her into a truly excellent professor.”
Though she feels she had and continues to have many obstacles to overcome be considered on the same level as her peers and classmates, she happily accepts the challenge. “I just feel like I have to push forward no matter what — it’s a passion for me,” she says.
“If I can’t do something, I need to know that I have other options, and I think of other ways to do something.”
Zumba was one of those challenges for which Ewa was determined to find an option for herself. A music lover, she was always interested in it, but she wasn’t sure how it would work. Josee Spence, a HAC group fitness instructor who teaches Zumba, kept telling her she had to come to class one day. “She said she was either going to push me in or I was going to come,” Ewa laughs.
The first week, Ewa came to HAC but didn’t go to class because she was nervous, but eventually, Josee found her in the café. She said, “alright, let’s go!” Ewa went because she couldn’t say no, and she’s loved it ever since.
Ewa tries to keep her weekends and Tuesday nights clear to be able to come to HAC to swim and do Zumba. She originally joined when the club opened in 2007 to swim, an excellent form of therapy for AMC, and to do physical therapy with Rudy Rudawsky of Elite PT. “I’ve definitely built friendships here,” Ewa says. “Some days on the weekend, I’ll spend entire days here. I’ll swim, then I’ll have lunch in the cafe, then swim again, then do Zumba. Sometimes I’m here from 11 to 5 on the weekends. I can’t make it during the week, so I try to use it as much as I can when I can. If I can be here, then I will be.”
Ewa’s father drives her to and from HAC when her schedule allows, along with helping her with her daily routine. “My parents take care of me 100% right now,” she says, and it’s always been that way for their family. Her parents were always eager to provide all they could for Ewa.
But as she gets older and so too do her parents, she is working on becoming more independent in what ways that she can. Her goal two years ago was to be able to walk again, but she concedes that it may never be a possibility. Over time with school and work, her ability to walk drifted away, and she speculates that to get the ability back, she would have to stop everything else she’s doing, like working, teaching, and tutoring.
As individuals with AMC get older, physical therapy has a lower impact on increasing mobility; Ewa would have to put in a lot of work to be able to walk again, and as she notes, it would never be a 100% guarantee. She has, however, been doing exercises in hopes that she’ll at least be able to stand up on her own and feed herself.
She’s also working with a UD Research Team that creates adaptive equipment. “They’re going to help me create a sling thing — similar to what I use to type — so that I can feed myself on my own and not have to rely on people as much,” she says.
While Ewa believes in working hard for what you want, she also believes in living a life full of fun. On evenings when she has free time, she loves trying new restaurants and going to movies with friends. She also loves a good Netflix binge just like the rest of us, with her Yorkie, Max, by her side (he thinks he’s her bodyguard).
And at work, she’s that coworker who won’t let you eat quietly by yourself for lunch. “When I see people who are quiet,” she says, “I’ll ask them if they want to go to lunch, and they’ll be like, ‘no, I want to sit here and eat my bar,’ and I’m like, ‘Come on, let’s go to Starbucks.’”
In the face of what may seem to many a limitation, Ewa Okla not only accomplishes the ordinary but the extraordinary. In many ways, she’s very much your typical 30-something, but in many other ways, she’s so much more.