SARASOTA, Fla. (June 29, 2016) – On bad days when she has trouble walking or being understood, Theresa McMillan recalls her mother’s quiet advice.
“She always told me to keep trying when I was facing a difficult situation,” she said, “to have patience and perseverance.”
Born with a rare congenital neurological disorder called Moebius Syndrome that afflicts about 1,000 in the United States, the 44-year-old USF Sarasota-Manatee student is often reminded of her mother, Mary, as well as her Air Force sergeant father, Robert, now both deceased.
She wears prosthetics to walk and is afflicted by facial paralysis, typical of Moebius, that makes speech, even eating a challenge. Unable to show emotion through facial expressions, her interactions are often complicated and sometimes misunderstood by others.
Twice weekly she travels on a SCAT bus from her home in Sarasota to the USFSM campus for literature classes where she is learning to be a writer. Unlike oral communication, which can elicit a quizzical response from listeners, writing temporarily frees her of the paralysis’ restrictive effects.
“Writing gives me a voice and [a way] to be creative,” she types out on a computer. “Since I have a speech impediment, writing helps to break down barriers in communication.”
Yet the process of writing is not without its own set of challenges. Most of her fingers were not fully formed, which forces her to type with her right thumb and ring finger. Carefully, she works through sentences and paragraphs, frequently tapping the backspace to correct typos.
She says USFSM’s small campus environment also helps as she adjusts to college life. She’s been able to work with staff and faculty personally so they understand her challenges, such as the extra time that she needs to write out notes and take tests.
“Because of the encouraging learning environment, I feel self-confident,” she said. “One of the issues I think the community should be aware of is disability and society. Sometimes it is difficult for someone who has a rare disability to acquire services, especially if that person functions at a high level but with some physical limitations.”
The Students with Disabilities Services Office at USFSM collaborates regularly with students such as McMillan, as well as with faculty and staff, to reasonably accommodate individuals with disabilities. The office works to develop plans tailored to each student so they’re able to fully participate in classroom activities and other areas of campus life.
An English student, McMillan is set to graduate in December 2017 and hopes to use her degree to further her career as a blogger and book author. She wrote a children’s book published in 1999, “I’m Smiling on the Inside,” and wants to pursue writing additional books to encourage others with Moebius to realize they can, and should, speak up.
“I also like to encourage other people with differences as well,” she said. “I think it’s important for everyone to understand empathy, even though we are diverse.”
The book, which includes illustrations by McMillan, introduces readers to both Moebius and the author with an emphasis on McMillan’s feelings and personal triumphs.
She explains that she has difficulty speaking and eating and is unable to smile, but loves venturing outside to peruse book stores and watch movies. She enjoys sports – her favorite is gymnastics – as well as simple pleasures like pizza, ice cream and pudding. To express warm feelings, she greets close friends with a hug instead of a handshake and smile.
Her book tackles some of Moebius’ socially challenging elements, too, including the perpetually blank facial expression evident in many with the condition. Unable to express emotions facially, many with Moebius struggle simply to be understood, including McMillan.
“It’s hard for me to make friends because of my face. Sometimes I feel lonely,” she wrote.
Undaunted, McMillan sees herself as on a mission to educate others about Moebius and express solidarity with those afflicted with the condition.
She goes on to say she has an affinity for anyone with a disability, not just those with Moebius, and says she hopes to write more children’s books chronicling those with “differences,” explaining that disabled children in particular are prone to feelings of isolation and loneliness.
She said she felt those same pains, too, until the early 1990s when she attended a Moebius conference and was able to mingle with others like her. Soon after, she saw the world open up and, imbued with confidence, started venturing outside more frequently.
Now, along with bad days she encounters happy, hopeful ones as well.
“Some days when I struggle with bus steps or trying to talk to someone who keeps asking what I said, when I have those days, I have to remind myself that I’m here for a reason,” she said, “and then I think about what my mother said, to keep trying, to not give up.”