ThirdAge Health Close-Up: “I Felt Like I Was Buried Alive”

By Sherry Amatenstein LCSW

On October 17, 2010 shortly after her 49th birthday Allison O’Reilly didn’t feel like herself. The McLean, Virginia author of Out of Darkness explains, “My left arm hurt all day. I took Advil. That night the room started spinning, my ears were ringing, and I felt really sick.”

A neighbor took her to the hospital where she was joined by her husband, Kevin, just returning from a business trip. The verdict: vertigo. The hospital sent her home. Five hours later she and Kevin were back. The word used this time was terrifying: stroke. Only two weeks earlier, she had received a clean bill of health

It turned out Allison, alas, was an over-achiever in the stroke department: She had “locked-in syndrome”, a brainstem stroke that leaves sufferers appearing to be in a coma. They are mentally alert but unable to move a muscle, except in some cases to blink their eyes. There is no treatment or cure for this condition, which affects 1 percent of stroke victims. About 90 % of those beset by locked-in syndrome die within four months.

“I woke up feeling like I’d been buried alive. Everything is going on around you but you are stuck, completely paralyzed. There is a trach – a breathing tube — and a feeding tube,” Allison said.

Doctors at the hospital said there was nothing to be done. They felt that the best course was a nursing home where she would be made comfortable. With more sadness than anger Alison recalls, “Without even seeing me, just from looking at my chart, they shut the door on me.”

Yet Allison was determined to beat the odds. Her husband had Allison transferred to the Medstar National Rehabilitation Hospital in Washington, DC. The doctor running the stroke unit initially didn’t know what could be done for Allison’s case either. But he was willing to try!

So was Allison. Intensive therapy was started. “I’m an only child. I was always independent. I like doing things on my own. It was hard to lie there – relearning everything from how to swallow, dress, go to the rest room. I couldn’t even press the call button for the nurse. Questions posed to me had to be “yes” or “no” so I could blink my eyes.”

She remained in a locked-in state for two months. After another two and a half months, on March 1st 2011, she experienced the hard-fought bliss of returning to the house she’d left in an ambulance.

Her recovery continued with three months of a five-day-a week Day Program at a nearby hospital. “I didn’t just continue therapy but went out into the community with an aide learning things like how to ride an escalator.”

Allison was not only dealing with the grueling work of recovery but also with the death of her mother. “Even though she died one week after my surgery, my husband didn’t tell me until two months later because I couldn’t communicate,” Allison said.

Barely a year after the stroke, this survivor demonstrated her heart and grit: “For my 50th birthday, 12 of us went to the Bahamas!”

Four years after the stroke, Allison is still progressing. While she wasn’t able to return to her career as director of marketing for a Fortune 100 company, her life is basically “normal.” With justifiable pride, she recounts, “I can dress myself – I’m just slow. Walking is hard. I use a cane and I have therapy four times a week to help with balance. Eating is good but I cough a lot because swallowing is still hard.”

She laughs, “I don’t wear mascara anymore. I’m afraid I’d put an eye out!”

On her website, Allison says she is sharing her story “to provide first person insight to the medical community and family members and to instill hope” in other stroke survivors, especially the younger ones.

Darlene S. Williamson, MA, CCC-SL, Founder and Executive Director, Stroke Comeback Center put it this way: “Stories of miraculous recovery give hope and inspiration to all stroke survivors and their families. This is a story of recovery that is not easily duplicated; a shining example of dedication to recovery and believing in yourself. Anyone touched by the effects of stroke can learn from the bravery and the spirit of Allison.”