RICHMOND — When Olivia Lewis was 21 years old and a senior at Virginia Commonwealth University, she suffered a massive brainstem stroke in her apartment and almost died.
But what came after was worse.
She woke up at St. Mary’s Hospital, locked inside her body, paralyzed from the head down, yet fully cognizant.
“Doctors would come in and talk to me and shine a light in my eyes, but I couldn’t respond. I couldn’t move. I couldn’t make any facial expression. It was like being buried alive,” Lewis, now 23, said from her home with her parents in Richmond's Forest Hill neighborhood. “It was the worst, most horrible, traumatic thing that’s ever happened to me.”
Olivia suffered bilateral vertebral artery tears on both sides of her neck, which led to excessive bleeding and blood clotting, blocking blood flow and oxygen to her brain and causing multiple strokes. No one knows how she got the tears, which led to the strokes and ultimately locked-in syndrome.
Locked-in syndrome is an extremely rare neurological disorder that affects less than 1% of stroke victims. With locked-in syndrome, a person is locked inside their body, fully aware, but unable to speak or move a muscle or even swallow. It is a condition for which there is no treatment or cure, and it is extremely rare for patients to recover any significant motor functions.
About 90% die within four months of its onset.
“It was a parent’s worst nightmare,” said Olivia’s mother, Lisa Lewis. “It was excruciating to watch.”
At the hospital, locked in her body, Olivia listened, fully aware, as neurologists told her family that she would never walk again or talk again and that the best option would be to put her in a nursing home.
“How dare they say that?” she said. “I was only 21.” She was getting ready to graduate with a degree in advertising and start her life.
“There was no way on this planet that I was going to put my 21-year-old child in a nursing home,” her mother said. “I knew there had to be another option.”
Olivia could move her eyes vertically, but that was all. After a week of late-night research sessions on Google, her parents figured out a way to communicate with her. They wrote down the alphabet on a board and pointed to letter by letter on the board. Olivia would blink on the letter, slowly, spelling out words.
For example, if Olivia wanted water, she would blink on the letter “I” then “N.” On and on, until the words “I need water” were spelled out. It was slow and painstaking, but it was all they had. And it was a revelation. Because now, Olivia could communicate.
She could say, “I am scared of dehydration.”
She could say, “They are giving me less water.”
She could say, “I don’t want to be here.”
Weeks went by. She was moved to acute care at VCU Medical Center. She still couldn’t move a muscle or speak or swallow. She was on a feeding tube and had a tracheotomy to allow her to breathe. She was completely dependent on someone else for every basic function, and it was excruciating.
“The prognosis for locked-in syndrome is very poor with a high mortality rate,” said Dr. Daniel Falcao, one of Olivia’s physicians at VCU. Falcao is a stroke neurologist who has seen several patients with locked-in syndrome. “Locked-in syndrome is associated with a life of dependence. Most patients who survive are bed-bound or can only move their eyes. It was an extremely vulnerable moment for this young girl and her family.”
But Olivia was a fighter, he said, even though she was completely paralyzed.
Olivia was at VCU for a month, where she spent Thanksgiving, then at Retreat Doctors’ Hospital on Grove Avenue for another month over Christmas and New Year’s.
“At one point, I decided: That was not going to be my life,” Olivia said.
Her parents decided to move her to Spaulding Rehabilitation Hospital in Boston, ranked No. 2 in the nation by U.S. News & World Report for rehab hospitals in the country. Olivia was flown by a medical flight to Spaulding, where she stayed and worked on inpatient therapy for three months.
When she arrived, she had a little movement on her left side and could communicate only through the alphabet board. Progress was slow and tedious, but she was determined to move forward.
“When I couldn’t physically move, I imagined moving every single day. I watched how people moved and walked and then I would replay it in my mind. As I began to show some progress, I began to practice actually moving EVERY DAY,” Lewis said.
“She was one of the most challenging patients I ever worked with, but also the most rewarding,” said Nick Herring, one of her occupational therapists in Boston.
At Spaulding, Olivia learned how to brush her teeth using a sling suspended from the ceiling to support her arm. She learned how to use her cellphone with her left hand, even though she was right-handed.
She became obsessed with researching survivors of locked-in syndrome online and their stories of recovery. If they said they could move their toe after three weeks of trying, she wanted to move her toe in three weeks.
“We had to tell her, it doesn’t work that way,” Herring said. “Everybody is different.”
In her research, Olivia found stories of people with locked-in syndrome who weren’t as lucky. She read about a girl who was 21 when she had her stroke and was still locked in at 40.
“That was the most terrifying thing to me. To know it was entirely possible that I could live for 20 years and have no control over my life,” Olivia said.
After three months, she left the hospital in a power wheelchair with the ability to use only her left hand.
“My doctors firmly stated I most likely had used up my window of spontaneous recovery,” Olivia said. “But I left the hospital that day with more determination and motivation than ever before.”
Olivia wanted to stay in Boston and keep working on her rehab in an outpatient capacity. Her family helped her find a wheelchair-accessible apartment. Her grandfather left her grandmother in West Virginia to live with Olivia and help with her outpatient therapy. Her aunt also joined them.
“They gave up their lives essentially for a year for me,” Olivia said.
For months, she would spend hours in therapy and then come home to do her own exercises. No matter how exhausted she was, she forced herself. Her grandfather would help her, both at the hospital and at home, every day.
First, she began to take a few steps at Spaulding. Then she would take a few steps at home, holding onto a walker, walking back and forth down the halls of her apartment building.
Holidays came and went. After months of practicing on the walker, she graduated from her wheelchair. From there, she worked tirelessly on speech: sounding out words, breathing exercises, trying to talk. Every day, she walked up and down the long hallway at her apartment, timing herself.
Eventually, after months and months of therapy and her own exercises at home, she transitioned from walking with a walker to walking with forearm crutches and braces on each leg. She began speaking, a few words, and continued to work day in and day out.
“I told myself, ‘If I wanted it bad enough and worked hard enough, I would make it happen,’ ” she said.
“The rate at which she recovered surprised everybody,” therapist Herring said. “Once she got the power wheelchair, she only used it a month or two because her walking took off. She must have been exhausted every single day.”
Her parents also traveled from Virginia to Boston every couple of weeks to see her, while also taking care of her two teenage brothers and working.
“I could not have done this without the support of my family and all the medical staff who helped me,” Olivia said.
After a year in Boston, Olivia returned home to Richmond in late 2019, a few months after she started speaking again, and continued her outpatient therapy.
By March of last year, she was walking with a cane and beginning to talk as her main method of communication.
“What Olivia overcame: it’s a miracle,” said Falcao, her doctor from Richmond. Olivia is the first he’s ever seen walk. “She overcame all of these barriers. I still can’t believe she’s walking independently.”
At her parents’ house, she has her own workout room where she continues to train, tirelessly, like an Olympic athlete.
She has a climbing machine and a stationary bike that she uses daily. She does sit-ups, triceps, pushups, squats, yoga. She does leg lifts and static holds. She does jumping exercises, frontwards and backwards. She has different colored bands that she uses to work the muscles on her arms. She has every kind of weight you can imagine. An ab roller. A balance board.
She has an Excel spreadsheet where she tracks her exercise. In Boston, she would do therapy for eight hours, then come home and do it for three or four more hours. Now, she said, she spends about 90 minutes a day exercising.
But she is still on her recovery journey. She has paralysis of part of her face, tongue and soft palate, and it’s hard for her to talk. She gets tired quickly, because everything, even speaking, takes so much effort. She still has issues with walking and experiences tremors in her legs and hands. But she is talking and walking without any assistance.
“She has so much motivation every single day. The fact that she walks now without a cane or a walker, it’s really incredible,” Herring said.
Now, she is finishing her final semester at VCU and hopes to start her own nonprofit to raise awareness about strokes in young people and locked-in syndrome.
“There’s so little information out there about strokes in young people,” Olivia said. And there’s even less for locked-in syndrome.
Olivia is going to call her nonprofit the New Brain Foundation. She hopes to schedule a walk or run in the year ahead to raise funds and research. She also hopes to get the chance to speak to others about her experience and overcoming the odds.
“My main message that I want to tell people is that it comes down to the power you hold within yourself,” she said, “and no matter your setbacks, if you believe, anything is possible.”