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‘I did it’: Local mom and Spokane Falls Community College grad reclaims life after relearning to walk from debilitating illness

Penelope Lilley, left, a graduating SFCC student and her mentor Janae Carrothers, the director of SFCC’s MESA, pose for a photo Monday. Lilley is a parent who recently had to teach herself to walk again after undergoing spinal surgery for a neurological condition.  (COLIN MULVANY/THE SPOKESMAN-REVIEW)
Penelope Lilley, left, a graduating SFCC student and her mentor Janae Carrothers, the director of SFCC’s MESA, pose for a photo Monday. Lilley is a parent who recently had to teach herself to walk again after undergoing spinal surgery for a neurological condition. (COLIN MULVANY/THE SPOKESMAN-REVIEW)

Editor’s note: This story includes mention of suicide.

Penelope Lilley knew the odds.

Columbia University’s transfer acceptance rate has historically been among the lowest in the country in the last few years. That includes fall 2019, when just 5% of transfer applicants were accepted, according to U.S. News and World Report.

Knowing that, Lilley – a 33-year-old mother of two who was more than a decade removed from school prior to attending Spokane Falls Community College – was doubtful about her chances. Even if her grades were good enough, she knew she needed more.

“But then I think back and I was like, ‘You had worse odds of being born with your birth defect than getting into this college,’ ” Lilley said, “ ‘and you won those.’ ”

Lilley was born with a lipomyelomeningocele, a fatty mass under the skin that attaches, and may pull on, a child’s spinal cord, according to Seattle Children’s Hospital. Symptoms of a tethered spinal cord can include back and leg pain, weak legs and changes in bladder and bowel control.

Lipomyelomeningoceles occurs in around one of every 10,000 babies born in the U.S., according to the hospital. Lilley said she underwent surgery as a baby to remove the fatty mass, though it wouldn’t be until much later doctors would address the tethered spinal cord.

Between that, her neuropathy and other health issues, Lilley said she has dealt with pain most of her life.

Before relearning how to be a student while attending community college, Lilley had to relearn how to walk after a surgery to address her spinal issues.

And even after regaining her feet, she still had stumbles along the way.

Getting up ‘is hard enough’

For much of her life, Lilley conformed to her pain by walking on the balls of her feet without support from her heels, she said.

Growing up in Davenport, Lilley said, she not only suffered from neuropathy and pain from the waist down, but also bowel and bladder incontinence. Frequent trips to Shriners Hospitals for Children helped keep her medical conditions in perspective, she said.

“It was something I always wanted to hide because I didn’t want people to feel bad for me because other people have it worse,” she said. “That’s always stuck with me, even now. I try not to let my medical issues hold me back from things, especially when I was younger.”

Attending Davenport High School, Lilley read books by Stephen Hawking and others in search of answers to some of life’s biggest questions: “Why are we here?” “How did we get here?”

Finding none, she found religion instead.

She started studying beliefs associated with Jehovah’s Witnesses. Her eventual husband, whom she met in high school, also followed the denomination.

“Getting out of bed is hard enough. Why would I want to get out of bed and then just live a crap life?” she said. “It was kind of a top priority for me as a young teenage girl. When I started studying the Bible, a lot of things lined up and it gave me hope. … God became my best friend at that point.”

Prior to that, Lilley was interested in going to college to study cosmology, getting accepted into Washington State and Whitworth universities. She wanted to apply to the University of Washington, but says she chickened out.

She ultimately decided not to go to college at all.

“Where I was wanting to know how the universe was created, I thought I found it through religion. I thought I found the answer: God created that,” Lilley said. “And so I thought, now what do I do? What would be the point of going to college for me?”

Married in 2006 when she was 18, Lilley and her husband ran a septage cleaning business together. The couple had two boys.

After her second child was born, however, Lilley began to suffer from “debilitating” pain – caused by a tissue tear in her bladder, she said.

The rounds of treatment that followed led back to Lilley’s issues with the tethered spinal cord from her birth defect.

Finding balance

After Lilley was taken to Harborview Medical Center, surgery was in play to relieve the tension around her spinal cord, she said. Her doctor told her there would be a chance she wouldn’t be able to walk again after the procedure.

“But, he says, I guarantee you if you do not get the surgery done, you will not be able to walk,” Lilley said.

Lilley got the surgery in late 2016, spending the next several days in Harborview’s intensive care unit flat on a hospital bed.

On the third day, doctors adjusted the bed 15 degrees every hour in anticipation of seeing if Lilley could stand. She did – apparently gaining an inch following the surgical process.

Lilley was transferred to the University of Washington’s Medical Center Inpatient Rehabilitation Unit, where she worked up her leg strength. She went from relying on a walker and crutches to eventually the cane with which she left the center a month and a half later.

“The first time I started walking, though, it’s really crazy,” she said. “I remember parts of my feet touch the ground that have never touched the ground before. There’s just these really weird things, like you don’t realize how important your sense of balance is when you don’t have it. I felt like a toddler learning to walk for the first time.”

Though she was regaining her physical balance, Lilley’s personal and emotional wellbeing started to fall more off kilter.

Her marriage with her husband started breaking down during her recovery, she said, ultimately to the point where the two were separated for a year prior to divorcing in 2018.

She suffered from suicidal tendencies; at one point, Lilley tried to hang herself with a chain in her garage, she said. She attributed the attempt to the pills she was taking for the pain, so she switched medications.

But after she considered snorting crushed hydrocodone pills and passing out on a railroad track, Lilley started working with a counselor and a psychiatrist.

“Your brain convinces you of weird things when you’re in that state,” she said.

‘She did it’

Lilley said she was eager to find a job to once again put her issues in perspective, just as her visits to Shriners did when she was younger.

She got a job at Visions for New Beginnings, helping children with autism with their daily needs. Lilley then joined a gym, losing 100 pounds within a year – helping her win a cash prize as part of a weight-loss challenge. In 2019, Lilley completed Spartan Race‘s “trifecta” of events.

“After I won this competition, I was like, ‘I can do whatever I want,’ ” Lilley said of the weight-loss contest.

Her turnaround partly encouraged her to attend Spokane Falls Community College.

She initially started out with an interest in becoming a physical therapist, a doctor or a urologist. Over time, however, Lilley’s aspirations turned to neuroscience, she said.

“We’ve eradicated polio. If somebody gets into a car accident and they can’t move, why can’t we make it so that they can?” Lilley said. “That did change when I was going to school, but I think that was because school allowed me to think bigger because the world was opened up now, not just my life or my community.”

Along the way, Lilley was mentored by Janae Carrothers, director of SFCC’s Mathematics Engineering Science Achievement (MESA) program. MESA works to provide guidance and support services to students taking science, technology, engineering and mathematics (STEM) classes.

Carrothers said she was especially impressed Lilley secured one-on-one Zoom meetings and established connections with professors at Columbia and UW, as they typically only meet with upperclassmen from their own universities – “much less if they’re a student from a community college in Spokane, Washington.”

“She did it. It’s difficult, but I always tell people it’s worth it,” Carrothers said. “It may be hard, but you’re stronger.”

‘Set your mind frame’

In the end, Lilley has been accepted into Columbia University – and UW, for that matter.

Columbia is her Plan A, though she said she is not going to New York City without her children. A custody battle could decide that.

Getting to a place to have those options, however, wasn’t without its own challenges, said Lilley, who worked full time while a full-time student and helping to care for her children.

“It was really hard to sit in a classroom and look around … and think, ‘I’m pretty sure I’m the oldest person here.’ You’re like, is this a mistake?” she said. “And then you just forgot really silly things. I spent a lot of time, especially in my math classes, to establish a really good base.”

The COVID-19 pandemic brought its own set of hardships. Particularly for Lilley, who said she relies on going to the gym for pain management.

Getting by, she said, involved a 4:30 a.m. wakeup calls, a spin bike for her place and a playlist full of “you got this, girl” music.

“You have to set your mind frame every day,” Lilley said. “I wanted to give up and I wanted to quit and I wanted to stop caring. So many times.

“But I did it.”

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