Imagine lying inert, unmoving, totally paralyzed -- and your only way of telling people "I'm not dead!" is the tiny blink of one eye. Imagine hearing the doctors call you a vegetable, and you can't even whisper back, "I'm still here."
Welcome to a rare world of patients "locked in" to bodies that have become prisons. Steve Chiappa of Toms River, N.J., lives with this medical mystery. And so does Glenda Hickey of Leduc, Alberta.
Glenda Hickey's nightmare began on the morning of Jan. 21, 2000, with the worst headache she had ever experienced. When the mother of two little girls picked up the phone to call her husband, Kevin, at work, she fell to the floor, suffering a bad nosebleed. Glenda's daughter Kaitlyn -- not 3 three at the time -- tried to help.
"I found all these Band-Aids, and I tried putting it all over her face so the bleeding would stop, " Kaitlyn explained.
Meanwhile, as 1-year-old Kennedy slept in her crib, Kevin, Glenda's husband, kept getting a busy signal as he repeatedly phoned the house.
"And it's busy, busy, busy, busy. So, I was getting kind of mad by about 11:30 thinking, you know, 'What the heck is she doing?'" he said.
Kevin finally called a neighbor to check on his wife, who found Glenda motionless on the floor. When Kevin got home he found Glenda unable to speak, move or even indicate that she was conscious.
"She just couldn't respond," he said. "We didn't know what she was doing or thinking. We couldn't figure it out."
Cindy and Steve Chiappa were high school sweethearts, who found each other all over again in their 30s. Their fairytale love story turned into a nightmare on the way to a Christmas Eve dinner, when Steve suddenly felt ill.
Cindy took one look at her husband and dialed 911. At the hospital the doctors told Cindy the situation was critical.
She said that doctors told her, "He's not going to ever eat, ever walk … maybe he'll open his eyes. He is not going to be more than a vegetable."
Steve and Glenda were both active, healthy people struck down in a flash -- unable to move or respond. What had happened to them?
It turns out they had a condition so rare that only a few hundred cases are known worldwide. It's called locked-in syndrome, and it's caused by a massive stroke different from other strokes in both its location and severity.
The syndrome is so difficult to diagnose that doctors often believe their patients are vegetables when they are not. People with locked-in syndrome can see, hear, feel and understand everything. They just can't move.
In Steve and Glenda, a blood clot had worked its way deep into the brainstem, the area of the brain that functions as a kind of relay station between our thoughts and our actions. The brain -- still conscious and alert -- can keep issuing commands, but the body can no longer follow them.
Dr. Stanley Tuhrim, who runs the stroke center at Mount Sinai Medical Center in New York, says the consequences can be absolutely devastating.
"The patient is unable to move any of their extremities," he said. "People with the classic locked-in syndrome are basically only able to blink their eyes, so they're able to think, but they simply can't communicate."