Twin sisters battle health challenges -- and life -- together

March 11, 2019
Nell (left), Rachel (right) and Sarah Redmond (center) in Oak Island, North Carolina during summer, 2018. (Photo provided by Sarah Redmond via UNC Media Hub.)

It was a normal Friday night for Rachel and Sarah Redmond. It was the twins’ bedtime, and the 12-year-olds laid together to keep each other company and to ward off monsters.

But Sarah’s body ached and she couldn’t fall asleep. She groaned as Rachel tried to console her.

Sarah said she was having flashbacks, each second felt like a moment she had previously experienced. She’s been here. She has felt this before.

It was happening again.

As the pain increased, Sarah crawled to her parents’ bedroom and nestled between her parents in an attempt to find relief.

The next morning, Sarah woke to her mother’s voice, telling her to get ready for her swim meet. Within seconds of leaving her bed, her vision went black and her body hit the floor.

Nell Redmond, the twins’ mother, was in the bathroom getting ready as she heard a loud bang. She thought it was their dog, Riley, playing.

As Nell walked into her bedroom and saw Sarah sprawled on to the floor having a seizure.

Sarah’s body convulsed as her limbs stiffened. Her eyes rolled back and she was unable to speak.

Nell screamed for her husband as her heart pounded. She didn’t know what to do besides dial 911.

Five long minutes later, Sarah’s body stopped shaking and she began to regain consciousness.

“That was the beginning of a 24-hour period where we didn’t know what was wrong,” Nell said. “Sarah had no idea what just happened to her.”

In November 2010, Sarah was diagnosed with epilepsy. The doctor in the emergency room told Nell, “Don’t be surprised if your other daughter has a seizure, too.”

Samuel Berkovic, an Australian neurologist in the Department of Medicine at the University of Melbourne, did a study on identical twins like Sarah and Rachel, and found a 62 percent chance the other twin will develop epilepsy if one twin has it.

Nell prayed Rachel was in the 38 percent.

Today, Rachel sits in athletic pants and a Carolina basketball t-shirt while writing in a green journal and laughing next to Sarah, who is sketching vigorously in her book. The twins are 21 years old and are juniors at the University of North Carolina at Chapel Hill.

It’s been nine years and Sarah still experiences daily auras, which are a form of onset seizures. The auras occur without triggers and attack her like a tiger catching his prey.

Before an aura, her limbs and mind grow heavy.

Sometimes she stays where she is, especially when she doesn’t make it out of the room in time, but most times she leaves the public eye out of fear that it’ll be noticeable and people will stare.

She feels like a balloon about to pop, her thoughts become spaced out and she forgets basic memories, from the taste of her lunch from that day or what she learned in class five minutes before.

Her body moves like a rocking chair. Sometimes people notice but most times they don’t. It’s small and hard to tell for those who don’t have auras, but for Sarah, it’s extremely obvious.

“It’s so much bigger than seeing someone shaking on the floor,” Sarah said. “Thousands of people have epilepsy, and we all have different types. It’s just something that we deal with and manage over time.”

Some of Sarah’s previous professors have tried to help them during an aura but there isn’t much they could do.

Sarah became known as “the twin with epilepsy,” Rachel said.

But four years after Sarah’s diagnosis, on Feb. 7, 2014, Sarah and Rachel celebrated their 16th birthday.

Rachel went to a Demi Lovato concert that night but doesn’t remember that. She had a history test earlier that day but doesn’t remember that either.

As she took the test, she turned to look at another student, her eyes became heavy and she slid out of her seat and began to shake on the floor, her teacher said.

“By the time the nurse got to her, she was able to have a conversation without knowing what was going on,” Nell said. “The nurse called me and I was thinking, ‘Here we go again.’”

Afterward Rachel seemed to be recovering fine, she retook her history test and continued going to school.

Five weeks later on a brisk Monday morning, Rachel was wrapped in her fuzzy blanket as her mother woke her for school.

Her head spun uncontrollably as she tried looking her mother in the eyes. Then she softly whispered, “I’m sorry,” as her body fell backward and she had her second grand mal seizure.

Nell held her daughters’ body in her arms as tears streamed down her face. She tried to remain calm but couldn’t. She screamed for Sarah’s help and said, “Call 911.”

After that, Rachel was diagnosed with complex partial epilepsy, the same as her sister.

The symptoms didn’t come “all at once” but transpired over time, the twins said.

Since early childhood, the twins would have “déjà vu feelings.” The motor response was dismissed by their parents who didn’t know at the time that this feeling preceded focal onset seizures.

“I’d have this feeling that I’ve been here before, that I’ve seen this before, and that’s the start of an aura,” Sarah said.

Her parents didn’t pay much attention to it at the time. But not long after Sarah’s first seizure, Dr. Richard Jacobson, Sarah’s pediatric neurologist in Charlotte, North Carolina, told the Redmonds this déjà vu feeling was a warning for focal aware seizures (FAS) also known as auras.

This abstract disturbance has become an average occurrence for the sisters. However, not all auras are the same.

“I have one around once a month for about 10 to 30 seconds,” Rachel, now 21, said. “At this point, I’m used to it. I just put my head in my hands and ride it out.”

Rachel said her auras feel like when television screens become white static. Her hearing gets muffled and she dissociates from reality.

“A seizure is like climbing a mountain, you’re going up, tension is rising and the next thing you know you’re on the top of the mountain top,” Rachel said. “Then you wake up on the base of the mountain and don’t remember the trip down.”

As Sarah and Rachel work together, heads tilted down, they look almost identical. The only difference is Rachel always wears a periwinkle watch on her left arm, which she jokes is her identifier.

At first glance, one would think they’re clones, and in this case, a product of disease. But they’re not. They have hundreds of small differences that make them unique.

Sarah is working on an assignment, for her “Aesthetics of Junk” class, in her sketchbook as her hand moves in small strokes. Her eyes flutter as she focuses on a miniature wire sculpture of a man riding a three hoofed horse.

“I cope a lot through art and I make art to get my emotions out,” Sarah said.

Her high school art teacher, Eva Crawford, said that Sarah has found her voice through art.

“She has to work through how she can psychologically amp up for everyday life in a way that most people didn’t have to,”Crawford said. “Art offered her that calm and fun she needs to release it all.”

While Rachel also uses a writing utensil and paper, she makes her art through words.

She has been writing fiction stories and memoirs since she was 14 and, in 2016, two years after she was diagnosed with epilepsy, she was a gold key winner for the Scholastic Art and Writing competition.

Even though Rachel has little time in her schedule, she writes in her journal daily.

Her bedroom is scattered with journals of all colors and sizes – some filled with stories and others barely touched with snippets of ideas.

“Whenever I feel antsy or that I feel like epilepsy is impeding my life I open my mini journals and have a stream of consciousness,” Rachel said. “It gives me a way to pour out feelings and memories that are swirling in my head.”

As art is therapeutic for Sarah, writing is for Rachel.

Rachel continues to write, filling half a page within a minute, and twirls the pink and green mechanical pencil around her fingertips. She pensively writes a couple more words then looks up.

“The hardest part about epilepsy is feeling like I’m living a life sentence,” Rachel said. “It’s always going to be a part of me, I’m going to have to manage it. But I remember that even though this has happened before, I’m still here.”

Rachel writes a few more words in her journal then leans back. Sarah peers over, smiles and nods her head and sketches in the corner of her book.

Then the twins share a moment, one of their millions of moments together, that perhaps no one else will ever comprehend, and carry on with what they were doing as they always seem to do.

Jacquelyn is a senior from Bedford, New York. She is a reporting major with a minor in creative writing. Currently, she writes for Grepbeat, where she reports on business and tech-based news in the Triangle. Jacquelyn also works for NC Business News Wire, where she reports on companies in the state. This past summer, she wrote for a luxury travel magazine in Sydney, where she focused on business and travel writing. After graduation, Jacquelyn hopes to enter business and tech journalism.