Surviving Stroke: A Personal Story

Brain Scientist Jill Bolte Taylor on Her Stroke, Recovery, and the Warning Signs Everyone Needs to Know

From the WebMD Archives

It all started with a headache -- pounding pain behind the left eye -- that wouldn't go away.

A healthy 37-year-old at the time, Jill Bolte Taylor tried to shake the pain with a cardio workout. But that didn't work.

Feeling rocky, Taylor headed for her shower. She noticed herself losing coordination and struggling with balance -- she had to lean against her shower wall.

The shower's roar startled her, and her sense of where her body began and ended was fading. "My perception of myself was that I was a fluid," Taylor tells WebMD.

When she got out of the shower, her right arm flopped against her body. "Oh my gosh, I'm having a stroke!" Taylor later wrote in her book, My Stroke of Insight.

As a Harvard-trained brain scientist, Taylor knew far more about the brain, and strokes, than most people.

And although on one level she was fascinated by what she was experiencing, the planning part of her brain, which was sputtering, knew it was do or die.

Taylor writes that she wanted to lie down and rest. "But resounding like thunder from deep within my being, a commanding voice spoke clearly to me: If you lie down now you will never get up!"

Calling for Help

Taylor was experiencing a rare type of hemorrhagic (bleeding) stroke caused by a malformed connection -- called an arteriovenous malformation (AVM) -- between an artery and a vein in her brain.

The bleeding flooded parts of Taylor's brain involved with movement, speech, physical boundaries, and senses. As a result, the concept of calling "911" was lost to her.

Taylor struggled to remember her work phone number, scrawling the numbers on paper. She writes that the numbers looked like "squiggles," which she matched to the squiggles on her phone.

A co-worker answered, recognized Taylor's voice from her groans, rushed over, and got her to a hospital.

After being in the hospital for five days for her stroke, Taylor later had surgery to correct her AVM. The surgery was a success -- but that was just the beginning of a stroke recovery that took eight years.

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Stroke Warning Signs: 5 Symptoms

In the dozen years since her stroke, Taylor has fully recovered her abilities. She has written a memoir, appeared on Oprah's TV show, and delivered speeches about her stroke experience that have been widely viewed online.

Taylor tells WebMD she always ends her speeches by teaching her audience this STROKE symptom acronym:

S -- speech or problems with language

T -- tingling or numbness in your body

R -- remember or any problems with memory

O -- off balance or any problems with coordination

K -- killer headache

E -- eyes or any problem with vision

"You might have just one or two or three of these. Rarely are you going to have all of them," Taylor says.

Most strokes are ischemic (clot-related) strokes, not bleeding strokes. And most bleeding strokes aren't caused by AVM. But any type of stroke is dangerous. Stroke is the No. 3 cause of death in the U.S. and a leading cause of disability.

Don’t Delay

Stroke is a medical emergency, so call 911 if you or someone else has stroke symptoms.

But Taylor says "a lot of people aren't going to call 911. There's a huge population of people who are just going to sit in denial of the whole thing."

That denial can be deadly.

"The biggest problem that the medical facilities are having now is that people are not coming soon enough after stroke. They're delaying it."

Taylor's advice: "If you're not comfortable calling 911, then call a friend and say, 'I'm having some neurological weirdness; call me back in 10 minutes or better yet, can you come over for a cup of coffee?'

"If that friend comes over and a half hour has passed, then that person's going to call 911," Taylor says. "Statistics show that more people will call 911 on someone else than they'll call on themselves."

Don't wait to see if possible stroke symptoms go away by themselves.

"As time passes, so does the ability to actually call 911... and you would never think that," Taylor says. "You would think, 'I'm going to pick up a phone and I'm going to dial a number.'"

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Stroke Recovery: What Helped, What Didn't

Taylor's stroke recovery included relearning to read, to walk on snow, and to do laundry -- all with her mother's help. And she had to start from square one.

Taylor recalls her mother asking her, what's one plus one. "I paused for a moment, explored the contents of my mind, and responded, 'What's a one?'"

All that relearning took a lot of energy, and Taylor found herself needing 11 hours of sleep.

"The only way I got any rejuvenation was to go to sleep," Taylor says. "When I go to sleep, I shut down all new stimulation coming into my brain. My brain has time to make some sense of the stimulation it's already received; it calms itself down, it organizes, it files information. ... I needed people to let me sleep until I could wake."

And during her waking hours, Taylor needed people around her who believed in her ability to recover, no matter how long it took.

Before she had her language skills back, Taylor relied on nonverbal cues her doctors and visitors displayed -- their facial expressions, their body language, whether they were in a hurry or in a bad mood.

It took effort, energy, and time for her to try to listen and communicate. And she would try to gauge who was worth it, or, as she puts it, who "showed up" and slowed down and cared.

"If you do show up for me, then maybe I'm willing to show up for you. But if you don't show up for me, I'm certainly not going to show up for you, and I'm going to disconnect. And the more time I choose to disconnect, the more disconnected I am from even trying," Taylor says.

Recovered, but Changed

Taylor now says she considers herself "110% functional" but different than before her stroke.

"In every way, I have recovered, but I have not returned to being the same person I was before," she says.

What's changed? Her priorities.

Before the stroke, "I was much more 'me' oriented, much more career oriented," Taylor says. "And now, I'm not like that. Now, I'm much more about 'we.' How do I use the time that I have here to use my gifts to make a positive contribution to how we live our lives and for the health and well-being for other people who are in the place that I have been?"

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Stepping to the Right

The morning of Taylor's stroke, when her brain's left hemisphere -- the chatty taskmaster side of the brain -- fell silent, Taylor felt a deep sense of peace.

Today, she fosters that sense of peace when anger and fear start to rile her emotional circuitry.

She notices those angry or scared feelings, asks herself if she wants to feel that way, and shifts her attention to the present moment -- often, to the weather.

"I look outside if I can. I look at trees that are blowing. I look at colors. I look at big pictures. I soften my eyes so I'm not focused on detail. I shift my mind consciously into the present moment and pay attention to the information coming in through my sensory system," says Taylor, who calls the process "stepping to the right," or shifting to her brain's right hemisphere.

It's a legacy from her stroke that Taylor says can work for anyone.

"It can make all the difference in the world," she says.

WebMD Feature Reviewed by Louise Chang, MD on May 14, 2009

Sources

SOURCES:

Jill Bolte Taylor, PhD, author, My Stroke of Insight.

CDC: "Stroke Facts and Statistics."

© 2009 WebMD, LLC. All rights reserved.

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