The following comes from a May 2 Washington Post article by Lindsey Bever:
Brisa Alfaro had a stroke and slipped into a coma in 2014. While in comatose, Alfaro suffered from the rare locked-in syndrome: she was paralyzed, but painfully aware. Now, Alfaro says she is still on the road to recovery, but she does not take her days for granted.
Not asleep but not yet awake, Brisa Alfaro could hear her doctors’ prognosis: She might never walk or talk again, and she may never eat or breathe on her own.
Maybe — just maybe — she would show involuntary movement, she heard them say.
She couldn’t respond. She started to panic.
At the age of 32, Alfaro had experienced a brain-stem stroke, causing a rare condition called locked-in syndrome — one that leaves patients paralyzed but painfully aware of the world.
She could hear — but she could not move or see or speak.
“I just didn’t want them to give up,” Alfaro told The Washington Post. “I didn’t want anyone to give up because I was still in there. I just needed time and for people to believe in me.”
In March 2014, Alfaro, a nail technician, traveled from her home in Southern California to a trade show in New York.
On the flight, she said, she had an allergic reaction — her eyes started to itch and her face started to swell. She took some Benadryl and called her mom. When her condition had not improved the next morning, she went to a hospital in Queens.
While in the emergency room, she said, she had a “pons stroke,” which occurs in a portion of the brain stem, and slipped into a coma.
“I was in a coma for several days,” Brisa Alfaro later wrote in a first-person account of her hospitalization for NAILS Magazine. “Before I was fully conscious, I heard a doctor pronounce what he thought was my fate to the other doctors.
“‘If she makes it past these next three days, she will never move again.'”
She added: “I was so scared, because I couldn’t move anything from my neck down — just as I had heard. I couldn’t even talk, let alone move any of my limbs.”
In the long days that followed, the Alfaros fought for the 32-year-old’s recovery.
Linda Alfaro said she sat by her daughter’s bedside and tried to bring her back — talking to her, touching her, playing her favorite music from childhood.
She saw her daughter’s fingers twitch, she said, but doctors told her they thought it was a reflexive movement.
She told her daughter to think about her eyes, her nose, her hands, her feet.
“I kept telling her that her brothers were coming and she needed to try really hard,” she said. “When her first brother came, she heard his voice and opened her eyes.”
Her eyes were open, her mother said, but were darting around without focus.
“But I knew it was intentional,” Linda Alfaro said. “I was laughing and crying.”
Barry Czeisler, who was one of Alfaro’s doctors at New York-Presbyterian Hospital, said locked-in syndrome is a condition that can occur when there is damage to the brain stem, disconnecting the brain from the body.
“They can only move their eyes up and down but otherwise cannot speak, move their mouths or any other part of their bodies,” he told The Post. “But, at the same time, they remain fully conscious.
The nightmarish condition, which can be caused by stroke or an overdose of medication, has no cure, according to the National Institute of Neurological Disorders and Stroke. Nor is there a standard course of treatment for the rare syndrome, according to the NINDS.
Czeisler, now an assistant professor at the NYU School of Medicine, said a major danger with the condition is that it can go completely undiagnosed.
“Imagine if you’re a patient,” he said, “you’re conscious — fully aware — and you can hear doctors talking about your current condition and prognosis without knowing you can hear them. Imagine how anxiety provoking that is.”
When Alfaro was strong enough, she said, she was transferred back to California for therapy at Ballard Rehabilitation Hospital in San Bernardino.
“Although I was improving quickly and regaining strength on both my right and left sides, I had to relearn how to do everything that used to be second nature: brushing my teeth, taking a shower, doing my hair, getting dressed. Not only were these things a challenge, they were exhausting. Doing simple tasks felt as if I was running a marathon. I exercised and practiced my daily routines; I even had to relearn to chew my food and swallow properly before I could finally eat.”
“Life is not that bad. Your days are not that bad. 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.”