'I Was a Prisoner in My Own Body': One Man's Incredible Recovery From Locked-In Syndrome
Mike Dils’ slurred words and weakness that led his wife, Cheryl, to take him to the urgent care clinic on Feb. 4, 2012, gave them no hint of what was to come.
In the waiting room he passed out. After EMTs revived him, he flatlined at the hospital. Within hours the vibrant realtor, then 64, was unable to move, breathe or speak on his own. He became the paralyzed victim of a stroke. In the days that followed, Cheryl says she struggled with whether to sign a do-not-resuscitate order: “The doctors told me there was zero hope,” she tells PEOPLE.
Mike heard it all, including his family wrestling over what to do with him. “You can’t imagine how desperate that is, being 100 percent of sound mind and not being able to convey that—while outside, people are telling you you’re a goner,” he says. “I was a prisoner in my own body.”
Then, after a doctor confirmed the dire diagnosis, Mike’s daughter Cheyenne, then 20, noticed tears in her father’s eyes.
“Can you understand us?” Cheyenne suddenly asked Mike. Abruptly she proposed going through the alphabet letter by letter, telling her dad to blink on the letters he needed to get his message out. In the breathless minutes that followed, he spelled out “NO HOPE.”
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That turned the startled family around. “There’s always hope,” Cheyenne told him. “If you want to get through this, we’ll help you.
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Mike and his medical team now believe the stroke had caused locked-in syndrome, a rare condition where damage to the brain stem prevents it from being able to direct the body’s movements. “The reason [the diagnosis] is missed is because patients look for all the world like they’re in a coma,” says Dr. Karen Hirsch, a neurocritical care specialist. “If no one tests their vertical eye movement and responsiveness to commands, there aren’t a lot of other ways to know that they’re conscious.”
Five years later—following months of painstakingly blinking out messages, intensive physical therapy and Mike’s own determination to retrain his brain to communicate with his body— he has regained his ability to talk, walk and even drive on his own.
“When you hear about recovery, what it usually means is that the person was able to take the surviving circuits and squeeze some new behaviors out of them,” says Dr. Steve Cramer, a University of California-Irvine neurologist, who attributes Mike’s rebound to the brain’s innate ability to find work-arounds—and also to Mike’s optimism, strong social support and Type-A drive. (At one point, Mike had Cheryl buy him hundreds of tennis balls that he tossed for hours on end into a trash can, to improve his hand-eye coordination.) “He was able to cross a goal line few others have,” Cramer says.
Adds Cheryl, 50, a hairdresser: “It’s just amazing, that’s all I can say.”
Mike, 70, who returned home six months after his stroke and now moves easily with a walker, works out daily on exercise equipment and spends hours in his garage wood shop, looks ahead to the day he believes he will walk unassisted. He holds no animosity for doctors who told his family he was unlikely to recover.
“I know in their own minds they thought I couldn’t feel anything, that I was frozen in time and that’s the way I was going to die,” he says. He wants to encourage others “not to throw in the towel.”
“He has an incredible message to share,” says Cheryl. “He’s certainly made an incredible difference in my life.”