Q&A with Dr. Jill Bolte Taylor: Stroke Recovery Advice for Patients and Caregivers

A Brain Scientist's Stroke of Insight

One morning in 1996, Dr. Jill Bolte Taylor woke with a pounding pain behind her left eye. At first, brushing the pain off, she hopped on her cardio glider as always. As she exercised the pulsating feeling began to intensify. Then she noticed something strange — her hands looked primitive to her, like claws. In fact, her entire body felt unusual. She felt almost detached from her own being as the chatter in her head fell silent.

Jumping off the glider, Jill noticed everything seemed to have slowed down. Her movements felt wooden and deliberate. She made her way to the bathroom where she lost her balance and put out her arm to support her weight. Propped against the wall, she started to feel there was no discernible difference between the atoms and molecules in her arm and the ones that the wall was composed of. It was as if the energy of both had blended, eliminating the boundaries between them.

What was in fact happening is that Jill was experiencing a massive stroke after a blood vessel exploded on the left side of her brain. It was this haemorrhage that was, in effect, temporarily shutting down her logical reasoning. Suddenly, her left hemisphere reentered the picture with the message, ‘Hey, we have a problem. We need to get help!’

As a brain scientist, Jill was all too familiar with the severity of her situation. Still she revelled in the idea of experiencing firsthand what she had up until then studied as a profession. Jill shares her experience, “I realised, ‘Oh my gosh! I’m having a stroke!’ And then the next thing my brain says to me is, ‘Wow, this is so cool! How many brain scientists have the opportunity to study their brains from the inside out?’”.

Although fascinated by the situation, Jill didn’t allow herself to dwell on the thought for too long and instead, sought help. Although it took her 45 minutes to place a phone call, because her mind could not process normally, she was finally able to reach a coworker. Once she did, she made a few garbled sounds. Fortunately, her colleague was astute enough to realise what was happening and got her help.

Later, Jill woke up in the hospital, feeling pure Nirvana. As she describes it, she felt “enormous and expansive, like a genie liberated from a bottle… I remember thinking, there’s no way I would ever be able to squeeze the enormousness of myself back inside this tiny little body”.  

As intriguing as Jill’s experience was, she had experienced a very severe stroke. Two weeks after her blood vessel burst, doctors removed a blood clot the size of a golf ball that had been pressing on her language centres.

Ultimately, it took her eight years to completely recover from the experience. In 2006, she went on to write The New York Times best-selling book on her experience called, My Stroke of Insight: A Brain Scientist’s Personal Journey. She also appeared in a 90 minute special on Oprah and delivered a viral TED Talk that has received over 24 million views to date.

Q&A with Dr. Jill Bolte Taylor

I sat down with Dr. Jill Bolte Taylor to talk more about her experience and what advice she has for those who have undergone a stroke. We also talked about how caregivers and health practitioners can better support stroke survivors to help aid their recovery.

Can you explain the difference between the two hemispheres of the brain? What is the purpose of each? How do they affect thinking differently?

The two hemispheres are connected to one another by axonal fibres, but they do not share any cell bodies. So the two hemispheres are completely different in their individual functioning and then they influence one another by either activating or by inhibiting what’s going on in the other hemisphere.

“I think about the right hemisphere as consciousness, right here, right now. It’s bringing information in and processing everything about the current moment. It looks at everything as a collective whole. When we’re in that way of being, we feel expansive and open. We’re focused on the bigger picture.

“It’s your ability to watch my facial language, my body language, understand the emotional content or inflection of my voice. All of that information is being processed in the right hemisphere. And also the right hemisphere controls the motor and sensation on the opposite side of the body. So the right hemisphere is going up and looking out at the more expansive whole view, while the left hemisphere is focusing more on the smaller picture and detail.

“The left hemisphere has control over the right half of the body’s motor and sensation systems, and is where our language cells are located. The left hemisphere is my ability to create the sound ‘DOG’ and place a meaning on that sound and be able to communicate that meaning through language. And there’s also a group of cells in our left brain that defines the boundaries of where we begin and where we end. Otherwise we perceive ourselves as enormous and as big as the universe because energetically, that’s what we are.  

“As a result, the two hemispheres are very different in the way they function, one looking at the bigger picture — a whole picture — holistically. As opposed to the left hemisphere which is more about details and it’s our voice of authority. My left brain defines me as an individual, so anything related to me and my relationship to the external world is what’s going on in that hemisphere. Ultimately, the two hemispheres work together in order to create some level of balance and a single seamless perspective of the world.”

Is there a big difference between our brain’s hemispheres and the brain hemispheres of other mammals?

“Well, when you think about what’s the difference between the human mammal and other mammals it’s that we have this higher cerebral cortex. So the deeper layers of the limbic system — the emotional system — we do share with other mammals, but they’re two different emotional systems. For higher cognitive thinking and executive function we think differently. For example, if you have a higher cognition stroke, that’s going to be completely unique to us.”

Considering the two hemispheres of the brain operate so differently, how would a stroke affect the different sides of the brain?

For me, my haemorrhage was in the left half, so I lost my identity as Jill Taylor. I lost my colour scheme. I lost my education. I lost my interests. I lost my awareness of people in my world. I didn’t know what a mother was, much less who my mother was.

“So everything that had to do with language and how I know who I am, like my name is Jill Taylor, this is my address, this is my phone number, this is the data that I’m related to. I lost all that. And in the absence of that, I shifted away from being the individual in this body, and shifted into the perception that I was a big, open, collective whole, more related to the energies around me.

“So that was my experience because I lost my left hemisphere, but if you wipe out the right hemisphere, these individuals report to me that they have a really hard time looking because they’re obsessed with the details, they’re obsessed with their language, they’re critically judgemental of everything and they describe themselves as not being able to find God.

“It’s clear there are two very different ways of being. And if you have trauma- of course, the brain’s a very big place, so depending on where in each of those hemispheres the trauma would be, then that would determine which cells would be going offline and what deficits a person would experience.

Can you describe what neuroplasticity is and how it affects different parts of the brain?

We were taught back in the ‘80s/’90s… really up until about 2000, that the brain cells you’re born with are the brain cells you’re going to die with, period. And what we now know is that there is actually some new cell growth, which is neurogenesis — the ability to create new neurons — especially in response to trauma. So, if there is a wound somewhere in the brain for whatever reason, then the immune system wants to bring in new cells that can clean up the mess so the neurons can create new connections.

“At the same time, we were taught decades ago that pretty much during the first 3 years of life, the connections that are made are going to be the primary connections that brain is ever going to have. And so we were giving our children an enriched environment during those first three years so they would have a better brain.

“Our thinking was to give them different toys to play with, different kinds of physical things to do, interesting things that are all different from one another so that a child can learn something and then learn something else and then make an association between them and then that brain would become brighter.

“That’s the neuroplasticity of the brain. It’s the ability of those brain cells to rearrange who they’re communicating with and the way that the brain is doing this is constant and we think of the brain as this really just stale, static thing, but it’s not. All those neurons right now are making new connections and that’s actually how we’re capable of learning — because new connections are being made, moment by moment, increasing and enhancing the capacity of that brain to understand new information when it’s coming in.”

Above: Dr. Jill Bolte Taylor’s viral TED talk in which she outlines the full event of her stroke and what she learned. The talk has received more than 24 million views. Source: TED


In the event of a stroke, how does this affect neuroplasticity or neurogenesis?

When you have trauma to the brain — any kind of trauma — cells are damaged. And, when cells are damaged, they tend to break their connections and turn into debris, which summons the cells of the immune system. The immune system responds by flushing up into the head, which can be a problem because the cranial vault is a fixed rigid structure and if you’re going to have more liquid flow into this fixed space then it’s going to push against the neurons and cause more damage through inflammation.

“I always tell families, don’t freak out. Don’t freak out for at least a month after someone has had a severe stroke because of the trauma and just the normal inflammation, which has to happen in order for the immune system to go in and clean out the mess.

“You just really never know what you’re going to have with that brain until it has time to settle itself down. I hate it when everybody says, ‘Squeeze my hand, squeeze my hand’ and it’s like, ‘I don’t even know what a hand is, much less how to squeeze it’, or ‘I don’t recognise you’, or ‘I can’t speak to you’. It might simply be not just because of the trauma, but because of the inflammation and the immune response to it.

“Over time the debris gets cleared out and you actually get a better sense of which cells have been traumatised but are still alive and which cells have been traumatised and died. Then we can use stimulation and different kinds of therapies to increase neuroplasticity so we can rebuild a functional network.”

How do neurologists typically encourage neuroplasticity after damage has occurred from a stroke?

“I’m a huge advocate for sleep. I don’t’ know what it’s like in your country, but in my country we pride ourselves on the least amount of sleep we can possibly exist on, and I love Arianna Huffington who says, ‘Yes, but imagine how much more interesting our breakfast might be if you actually had another hour of sleep’.

“Yes, the brain can function poorly when it’s sleep deprived but when the cells have been traumatised and inflammation is coming in, cells really struggle. It’s like- let’s say my auditory system has been traumatised and so now all of a sudden a noise — just the sounds coming in through my ears — make no sense because those cells are not organised in their little network to make meaning out of the sound. When I have to work a whole lot harder at focusing, it can be very painful and I can be really easily distracted. So, sleep to me is my number one for how to set the brain up in order for it to recover.

“Diminishing external stimulation… being careful about how much caffeine you’re putting into your system, how much sugar you’re consuming, how much overall stimulation from light you’re bombarding the system with. You want to coddle those cells so that they can relax and become more functional again and then provide new forms of just typical education. The neuroplasticity of my brain cells allows you to retrain me how to read, retrain me how to speak, how to walk, how to hold my body evenly — symmetrically — so that I’m not walking like a lumberjack. It is critical that you balance my effort with plenty of quality sleep.”

What are some impediments that slow down the recovery from a stroke?

First, not getting enough sleep. One of the other enormous things is disappointment. Let’s say, I’ve had a stroke and I’m impatient because now I cannot by definition do the things that I used to do before. The brain cells are not in a hurry — we’re in a hurry. So if I get completely disappointed and I get unhappy and I get discontent and I complain, that’s energy and you only have so much energy as a survivor.

“You can either put all that energy into complaining and into the negative emotions or you can actually look at what you can do today and focus on the positive. In other words, you can approach things with a generosity of spirit that can kind of lift you out of the muck and say ‘I’m better than I was three weeks ago. I’m better than I was two weeks ago, I’m better than I was yesterday’. A little gratitude sets the system up for success.

“And it really helps if there are people in our environment cheering us on and helping us realise what can we do today that we couldn’t do last week. Because our brain is in a state of not being able to track that linearly and it helps for us to be cheered on from the outside.

“I think also again, stimulants. It’s interesting that our society, at least in the US, will often pump survivors with amphetamines in order to get everything going and then we’ll put TVs in their faces, or park them in hallways where people are walking by and lots of stuff is going on.

“I guess the idea is that if we want these people to become socialised again then we have to push them out into a socialising environment and it’s like, ‘Oh my gosh! What a bad idea!’ Honour the healing power of silence and low stimulation and gentle visitation.

“The patient is a wounded animal. When I had my stroke, I was a wounded animal and for people to come in and shine bright lights and make a lot of noise and have everything going quickly and talk a million miles an hour was horrible. So instead of trusting my doctors or visitors who were insensitive and in a hurry, I saw them as something to push away from and I would choose to not engage with them.”

Do you have any other advice for caregivers aside from reducing stimulation?

“That’s the absolute biggest thing. I mean we in the States, we have these big old fluorescent lights, right over the head of the bed, and anybody comes in and they click on that light and it’s like ‘NOOOOOO!’ And it’s just like being a sick, wounded animal. It’s horrible.

“For some reason people tend to raise their voice when they speak to a stroke survivor, but I don’t have a problem hearing you. I have a problem understanding you. And if you get in my face and you get louder at me, then I just think you don’t have any idea what you’re doing and it repels me from you, and I lose my confidence in you as my caregiver or as my physician.

“I encourage people to come in softly and slowly, and to have the lights low. And I think it’s really, really important that not just the doctor staff, but the nursing staff, and anybody who comes in and manages me as a patient, they announce themselves, tell me what they are doing, and they don’t have to yell.

“Come in the room and you say, ‘Hi Michael, I’m Jill and I’m here to check your vitals and just be here with you’. And it’s like ‘Okay, here’s a decent human being, walking into my room, treating me as though I’m worthy of respect’.

“Whether I can understand you or not, you’re coming in with your softness and your gentleness and your kindness. And you make it feel like a safe place, instead of a scary place. We all know what it feels like when someone comes in and they’re just analytical and they’re way up here and you’re all the way down there. Why would I even try to pay attention to you when you don’t even want to be here? Because patients pick up on things, including facial expression and body language and tone of voice.”

Is there a higher risk of strokes in men or women?

“I should know that stat but I don’t. But I can tell you that there are more strokes in the left hemisphere than in the right hemisphere. This is assumed because of the way the blood supply comes up into the brain — shooting more directly up from the heart as opposed to a little shift.

“But I also think this statistic may be wrong because its really hard, if not impossible, to deny or hide the fact that you’ve had a left hemisphere stroke because it’s your language and it’s your interaction with the external world.

“Whereas I could be having all kinds of weird stuff going on in the right side of my head that nobody can see and that I don’t want anybody to know about because then I’ve got to go to the hospital and I might be scared of that. So I think people have a lot of denial around strokes because of fear.

“The problem is that a stroke is an emergency and if it’s a blood clot, they now have wonderful medications — TPA that they can shoot into the bloodstream that can bust up these blood clots within an hour or two — but 3 hours after the onset of the stroke we can’t do that. Not in the States at least.

“If you’re having a stroke, and you know you’re having a stroke, get yourself to an emergency room sooner rather than later, because if it’s a blood clot — ischemic stroke — then they can bust up that clot and really diminish the longterm brain trauma.

“We tend to think, ‘Oh yeah, maybe if I feel bad later, I might go get help’, and that’s the biggest reason why strokes get severe and people die. It’s because people don’t recognise the warning signs and realise, if I go to the hospital now, the turnout will be 1000% better than if I don’t.”

In your experience, what are the big warning signs that a stroke has occurred?

“I break it apart to S T R O K E. S is problems with speech — language. T is tingling in the body and it’s usually only going to occur on one side. R is remember — sudden problems with thinking. O is I feel off-balance because either my leg or my arm muscles on the opposite side of the body are having a problem. K is killer headache. And E is a problem with eyes and often there will be a double vision or some kind of strange thing going on with the eyes.

“So S-T-R-O-K-E is what people should remember and it’s important that you understand that you might have only one of those symptoms or you might have all six, but a stroke can often be treated if you’re quick to getting help.”

Are women who haven’t had children at higher risk of stroke than women who have?

“I haven’t heard that. I don’t know if that’s true or not. I do know that there are advantages and there are disadvantages to taking the birth control pill. I believe it adds some protection against breast cancer, but right now the amount of breast cancer that’s going on is off the charts and it’s because of the electromagnetic radiation from our mobile phones, and young women are placing their phone in their bra and that’s a terribly bad idea.”

Wow, it scares me, because men also often carry their phones in their front pockets.

In the States the college kids are putting their phones in their front pockets and it’s killing sperm count. That’s terrifying- that you’re killing something in your body on purpose and not realising it is damaging healthy cells.”

Are there any other books or projects you’re working on that are worth telling our readers about?

I will probably be coming to Australia for a big tour in 2020 and that is very exciting. If I do that it will be through the Business Chicks. I’m also working on book number two and it’s very exciting.

“I never thought I’d write another book, but I actually had something really important to say that really simplifies how people can understand their brain better, so I’m hoping to have that done by the end of the summer so it can go out into the world next year.”

I know you’re still writing it, and I’m sure you’ve got a big launch lined up, but can you give us a sneak peek on what it’s about?

I speak to audiences about the alarm-alarm-alert-alert limbic system and how information streams in through the sensory systems into these limbic cells. From here the cells in the amygdala are essentially asking the question, ‘Am I safe?’ And when enough of the external world feels familiar, we feel safe and the alarm system shuts off and our hippocampi turn on and we’re capable of learning and memorising new information.

“What I realised when I talked to people is they think we only have one amygdala and one hippocampus. They know of the amygdala and hippocampus, but the fact is that we have two — one in each hemisphere. This means we have two emotional systems and we have two cognitive minds and that seems to be big news. So that’s what the next book is about.”

Is there anything else you want to say to our readers?

“I will say one thing- I don’t know how it is everywhere in the world, however, it has been the dogma of medicine for some time that the brain is not capable of recovering. This is a problem because some neurologists tend to not give hope for the ability of the brain to recover and I think that’s a disservice to the patient. If the doctor says, ‘Don’t even bother to try’, the families aren’t going to try and the patient is not going to try and that patient will not recover as well.

“I’m a firm believer that the more you believe in a patient and the more hope you give a patient, the more opportunity you give a patient to recover and the better that patient will heal. I think doctors have incredible power over how we — the patient — look at our ability to recover. I just think we need to be really, really careful about not squashing hope.”

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