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Woman Recounts 'Locked-In Syndrome' Ordeal

A California woman's nightmarish experience with "locked-in syndrome" has changed her outlook on life, helping her realize that "every day I'm alive and well is a gift," she said in an interview.

Brisa Alfaro's ordeal began in March 2014, when she left California to attend a trade show in New York. After having what she thought was an allergic reaction on the flight, Alfaro took some Benadryl and went to bed, but when she didn't feel better the next day, she checked herself into a hospital in New York City, according to The Washington Post.

While she was waiting in the emergency room, Alfaro had a pons stroke -- a stroke that affects a critical area of the brain stem and spinal cord, where densely packed nerves relay messages between the brain and the rest of the body.

The stroke left Alfaro in a coma, she told The Washington Post, and she was transferred to New York-Presbyterian Hospital in Manhattan, where she was placed on life support so she could continue to breathe as the rest of her body shut down.

Alfaro was lying in her bed in the hospital when she says she overheard doctors discussing her condition, saying she might not survive the next few days -- and if she did, she probably would not be able to move or communicate again.

“I was so scared, because I couldn’t move anything from my neck down -- just as I had heard," Alfaro wrote in Nails magazine, where she gave a first-person account of experience. "I couldn’t even talk, let alone move any of my limbs."

Meanwhile, Alfaro's mother, Linda, had arrived at the hospital. She told The Washington Post she refused to believe the doctors when they presented her with her daughter's diagnosis.

“I was in denial,” Linda said. “I remember, when they were telling me that, I said, ‘nope.’ I tuned them out. I didn’t want to hear it.”

Eventually, Alfaro was able to signal to others that she was conscious through small movements -- twitching her fingers and moving her eyes in response to stimuli in an effort to communicate to her doctors and family she was alive and conscious.

Before long, the 32-year-old California woman was able to make larger movements, like giving a thumbs-up in response to questions.

One of the doctors who treated Alfaro, former New York Presbyterian physician Barry Czeisler, said patients with locked-in syndrome have virtually no way to tell others that they are still conscious.

“They can only move their eyes up and down but otherwise cannot speak, move their mouths or any other part of their bodies,” said Czeisler, who has since become a professor at the NYU School of Medicine. “But at the same time, they remain fully conscious. They’re fully conscious but unable to communicate with the rest of the world.”

Alfaro says her experience has changed the way she thinks about things, and has helped her to realize her day-to-day struggles aren't insurmountable.

“Life is not that bad. Your days are not that bad," she said. "Whatever I was stressing about before was nothing compared to that day. Now I never have bad days. because every day I’m alive and well is a gift.”

Sources: The Washington Post, Nails Magazine / Photo credit: Nals Magazine

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