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Richmond woman defies odds after brainstem stroke: 'I really felt like I was buried alive'

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Posted at 4:08 PM, Feb 26, 2021
and last updated 2021-02-26 17:36:24-05

RICHMOND, Va. -- Olivia Lewis was in her prime. She was a senior at VCU with good grades, great health, and a bright future ahead.

"I did not ever, ever, ever expect something like this to happen to me," said Lewis.

But on October 4, 2018, her life changed overnight. The then 21-year-old suffered a brainstem stroke in her sleep.

"I remember feeling this excruciating pain in the nape of my neck," Lewis recalled.

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Olivia Lewis

She jolted out of bed only to fall face down.

"I just laid there thinking I'm going to die basically," Lewis said.

Roommates found Lewis an hour later and called an ambulance to take her to Saint Mary's Hospital where she underwent brain surgery.

She woke up days later paralyzed.

"Doctors were coming in shining a light in my eye. People were talking around my bed, and I couldn't respond," Lewis explained.

That's because Lewis was literally locked inside her own body.

The medical term is locked-in syndrome. It's an incredibly rare neurological disorder that can happen after a brainstem stroke. You can see and hear everything around you, but you can't move or speak.

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Olivia Lewis

"I really felt like I was buried alive," Lewis said. "I mean, I could literally only move my eyes.

When family or friends came to visit her hospital room, the only way she could communicate with them was by blinking.

"Basically, if I wanted water someone else would say a-b-c-d-e-f-g-h-i and I would blink on "i" and then continue until I said I need water," Lewis explained.

This went on for four long months as she very gradually regained movement. From wiggling her fingertips to moving her tongue, Lewis had to retrain every part of her body.

"I was a baby you know. I had to learn how to sit up again. I had to learn how to feed myself," Lewis said.

She eventually moved to rehab and began her still ongoing recovery journey. By her side every step of the way was her grandfather John Bianconi.

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Olivia Lewis

"I told her, I said from my viewpoint, you're going to walk," said Bianconi. "Because I'm seeing it."

Lewis said her grandfather played a critical role in helping her reclaim her strength. He documented her time in rehab and therapy, witnessing Lewis taking charge of her own body once again.

"Livie has an extraordinary spirit," said Bianconi. "And I'm not saying this as her grandfather. She's had this spirit ever since she's been a kid."

That spirit of resilience put Lewis on her own two feet again in June 2019, but she said her healing is far from over.

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Olivia Lewis

And even if she had the power, she wouldn't erase the stroke from her life.

"I really feel like it was supposed to happen in a way," said Lewis.

Because now she counts every blessing, no matter how small.

"Everyday is a good day, you know?" she added.

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Olivia Lewis

Throughout all of this, Lewis said she had access to the best care and equipment, but that's not the case for every stroke victim. So she's creating a non-profit that will provide support and resources to those victims who may not be as fortunate.

She calls it paying her privilege forward.

You can keep up with Olivia on Instagram.