Interview With Jill Bolte Taylor About Stroke Victims and Nursing Homes
People suffer strokes. If they don't recover an ability within six months, they'll never recover it. Stroke victims want to get back to who they were.
These are a few of the prevailing ideas that Jill Bolte Taylor challenges in My Stroke of Insight: A Brain Scientist's Personal Journey, her remarkable memoir about her stroke in 1996 and her eight-year recovery. The book has been a New York Times best seller almost since it came out in May. A video of her describing her experience at the Technology, Entertainment, Design (TED) conference in February, 2008 is viewed by about 20,000 people a day, and Time magazine named her one of the world's 100 most influential people in 2008.
But before all this fame, Taylor was an unlikely mini-star. She was 37 years old and working at the Brain Research Center at Harvard when she woke up one morning to discover that she was experiencing a massive stroke, due to an undiagnosed congenital disorder in the blood vessels in her head. Over the course of four hours, the scientist in her observed her brain deteriorate to the point that she could not walk, talk, read, write, or remember any of her life. After surgery and a lengthy recovery, she decided to write a book about the insights she gained -- and to help caregivers better relate to stroke survivors.
The bombshell of Taylor's book is the idea that strokes can be pleasurable, in part, and even transformative if they occur in the rational, detail-oriented left hemisphere of the brain. As she began to feel detached from her body and her brain "journeyed into right hemisphere consciousness" -- the more intuitive side -- she experienced a kind of nirvana: "euphoria, tranquility, safety, and blessedness." It was a place where she was tempted to stay, and as a result, she writes, "recovery was a decision I had to make a million times a day." In fact, Taylor made a conscious decision not to recover portions of her left-hemisphere character that she found she didn't like, such as meanness and incessant worry. Even now, long after her recovery, she often taps into that place of inner peace and outlines ways that readers who haven't experienced strokes can do the same.
As much as Taylor's book is a testimony to the resilience of the human brain, it's also a tribute to the power of care giving. Taylor dedicated the book to her mother and caregiver, G.G. (Gladys Gillman) Taylor, a retired teacher who moved in with her daughter and devoted herself to her recovery. Taylor's book includes helpful advice for stroke survivors and their caregivers, including ten assessment questions and the 40 things that were most important to her healing. Her account of her recovery is also full of other invaluable bits of information, including these tips:
- It was better when people didn't finish her sentences when she searched for words but let her "find the circuitry" to do that herself.
- Though she couldn't read or write with a pen in the early stages of recovery, she could type at a computer.
- Breaking challenges down into small, simple steps kept her motivated to work toward recovery.
- It was important that she was loved and accepted for her current self, not who she had been before.
Taylor is now affiliated with the Indiana University School of Medicine, travels for the Harvard Brain Bank, and is developing a virtual reality system to help stroke survivors rehabilitate themselves. She spoke with Caring.com about her stroke and what she learned from it.
You've said that people who've had a stroke may not be having as bad a time as our left-brain thinking projects that they are. How common do you think the kind of euphoria you experienced is?
It depends which cells have been traumatized. Four times more strokes happen in the left hemisphere than in the right hemisphere of the brain in the U.S. population. I don't know the statistics for other countries. In the left hemisphere, there are three primary arteries, and the majority of those strokes occur in the middle cerebral artery, which goes to language. And I really have to have my language in order to tell me that I'm miserable. So if I wipe out my language and my brain's not telling me I'm miserable, then I may not be miserable. But if you're on the outside telling me, "Oh, this is such a tragedy. Jill has suffered a stroke, she's a stroke victim," then I can pick up on your energy that I'm in a really bad space and I should be feeling bad about myself.
I get lots of e-mails on a daily basis, people writing to tell me, "Thank you for telling my story." So I know that there are lots and lots of people who have had some kind of brain trauma that has opened them up to a more positive perspective. I can't give you statistics -- I can only tell you that I know I'm not alone.
Do you think elderly people in some cases might not want to put in the effort to come back from that blissful state?
I think that's absolutely true. If I've found an alternative perception of reality and shifted into a space where I'm at peace, and outside of me is not a peaceful or inviting place -- if it's too loud all the time, if there's too much light stimulation, if it's just painful -- then I'm more often going to choose to say, "I'm tired. I'm just not going to try to reengage."
Do you think that the atmosphere of the conventional rehab centers you describe -- patients on stimulant medications, propped up in front of a TV -- commonly makes stroke survivors want to shut down?
If I had been in that atmosphere, there's no question I'd have chosen to zone out more. And in e-mails written to me, other people have also said that it's a choice to try. Either I find the external environment attractive enough that I want to engage, or I'm just in pain and I want to shut down.
Do you think it's difficult for families to accept that a loved one who's had a stroke may end up somewhat different than they were before?
I think that's a huge issue. I'm getting feedback from people with brain trauma who've had some kind of accident and are now disconnected from their normal reality. They're so clear that they've lost certain functions, but the rest of their functions are still OK and they're OK with not having those other functions. But their families don't get it because they're on the outside looking in, saying, "You're not normal anymore."
So the person who experiences the trauma or stroke may not be unhappy about being different?
Exactly. I've had so many people say to me, "When you said about your former self, 'That woman died that day,' I know exactly what you were talking about." And I think I was fortunate because my caregiver was my mom, and my mom's going to love me no matter what. It's OK with her if my personality changes. But a spouse has expectations of you, and if all of a sudden they're married to somebody they don't know, it can get really scary. That's a much more unfortunate and unacceptable position from the perspective of the caregiver.
Many people have written, "What happens if somebody loses their right hemisphere?" My favorite story is: "My mother-in-law has lost the right hemisphere, the peaceful side, and now her critical judgment is just harsh and negative and mean. What can we do to survive this new attitude and help her so she's not in this state of stress and tension anymore?"
What do you suggest to them?
First of all, I sympathize and encourage them to realize that this is just circuitry -- all of the expression of what we are is circuitry. And I try to help them understand what it might be like now for her.
People who've experienced a stroke in their right hemisphere have told me, "I can't get out of me now; I can't get out of my ego into something bigger." Or, "When I go to the beach or go out in nature to try to see the big picture, my brain automatically picks up all these fine details -- I can feel it doing the zoom." So they're training themselves backward from how I trained myself. I had the big picture and had to train myself to push the zoom to get the detail.
Some people have said that when they listen to classical music, their brains automatically pick out the flute line or clarinet line or rhythm, analyzing all these pieces, and they force themselves to blur the details and experience the kinesthetic experience of the symphony to allow them to move again, to get their body back into the movement. So I do think there are ways that we can train and retrain wounded circuitry to take over function that has been lost.
When you were taken to the hospital, you were saddened by the medical community's failure to communicate with someone in your condition. Can you describe what made you feel that way?
Well, things happened very fast in the hospital. Normal energy in conversation seemed to happen at a million miles an hour in comparison to what I could track. So people would come in and talk to me, and ask things of me -- really demand things from me -- and there was no way that I could understand them. But I kept thinking that if they slowed down and enunciated clearly and were patient with me, maybe, just maybe, I might pick up an inkling of what they were after. It might take me 12 hours to figure out what it was, but at least I would be willing to try to connect in. So the speed was a difficult issue.
Distractions and noise were also issues. If there were two people talking at the same time, they canceled each other out for me. There was just no way I could try to focus on anything, so I didn't bother. If there was background noise, if the radio was on and somebody was talking to me, forget it. TV, any extraneous noise, was an issue.
The other main issue was when medical professionals really didn't deal with me at all. They dealt with my colleagues and my caregivers, and didn't even bother to try with me. Or they'd yell at me. They'd raise their voice and I'd think, "Oh no, no, that's the last thing I want you to do." There's kind of this automatic assumption that it's a hearing issue, but my ears are fine. I don't comprehend what you're saying and now you're yelling at me, and I find that very disturbing.
When a doctor asked you who the U.S. president was, you wrote that he was assessing your ability to cognate by how fast you could recall information, not by how your mind strategized to recover the information inside it. Do you think that kind of testing is not a very effective way to measure a person's poststroke capabilities?
I think it's a terrible way. The judgment of how well people are doing is totally based on language, but even if they don't comprehend language, there's a whole lot of other circuitry going on. If a family member or friend of a person who's had a stroke contacts me, the first thing I ask is, "Can the person speak?" Most often they'll say, "Yes, thank God, they can talk." And I think to myself, "You have no idea." I would rather lose my left hemisphere than my right hemisphere, because you don't want me irritable. If I don't have any of the peacefulness to balance me, I'd rather get rid of the voice and the language, because I still have a lot of other functioning and can be a contributing human being.
So we miss a lot about what is working. The little subtle things that are really the way that we think and monitor are dealt with by other trained professionals, such as speech therapists, who deal with much more than speech. And physical therapists do much more than deal with the body. So much focus is placed on verbal language, but there's so much more in communication that we don't use.
So if a parent has had a stroke and is in the hospital, should a caregiver try to make the staff slow down, minimize distractions, and consolidate their information?
Absolutely! I don't know how many nurses I've had say to me, "You've changed the way I will give care." One gal said, "I work the night shift and I hear the machine, and I go in and I don't even look at the warm body in the bed. I don't know if they're awake or asleep. I go in and I deal with the machine and I leave." I think it's just because this is a level of bedside care that wasn't taught.
You write that exploring life and recovering files with your caregiver -- your mother, G.G. -- was a lot of fun. How did she make it fun?
Well, she was patient with me. We were on my time. I think that makes all the difference in the world. Because she was living with me and was the guard at my door for my sleep and energy, I was her captive audience and she was totally on my schedule. If I woke up in the middle of the night and was hungry and needed something, or was awake, then she woke up. To have that level of flexibility made it very convenient.
If my caregiver had not given me sleep, nothing else would have gone right. When I was in a good mood, it made a big difference -- the difference between "I'm fresh and ready and you've got 20 or 30 minutes to do something really worthwhile with me and then I'm out" and "I'm absolutely exhausted and I don't want you to be here. You're hurting me -- it's physical pain for me to try to focus my mind on you when my brain has this incredible headache because it wants to go to sleep." Or, "I'm zoned out on my Dilantin because I just took it a couple of hours ago."
Can caregivers take their cues about sleep and alertness from the person they're caring for? Or are stroke survivors often unable to communicate that to them?
I think it's real clear when somebody is overdosed on a med and is never alert, because even people who are in extremely vegetative condition have moments of physical alertness when they're aware. And I think you need to look at the med level anyway, because whenever people are in a condition that makes them unable to communicate, we make the assumption that they're depressed and give them an antidepressant. Well, the last thing I would have needed was an antidepressant. And if I'd had one, I would have had an adverse reaction because I didn't need it. Then we're dealing with a "drug Jill." What is going on with Jill we'll never know. So I think we need to pay very close attention to what people are like in their cycle: When are they alert, when is there joy, when are they playful, when is there an opportunity to try to do something?
It seemed that you and your mother had an agreement that you needed a lot of sleep, but when you were up, you were ready to learn.
And if I wasn't, that was real clear because my face would droop, I would droop, and it was obvious I should just go back to bed.
You really take to task doctors who say that if stroke survivors don't recover an ability within six months, they won't get it back.
I absolutely hate that. I remember that I heard both three months and six months. What I could do and what I wasn't capable of doing was very well recorded at three months, and I wasn't capable of any kind of complicated cognition. I had the mentality of a very young child. At the six-month mark, I wasn't really much better. There were certain things that I'd gotten back because, again, I see it as circuitry and I worked the circuitry and got the cells to perform their function, which was mostly language.
Language was my number-one priority. Once you talk like a relatively normal person, people think that you're back and you're fine. But if there's nothing going on inside the brain as far as cognition is concerned, then it's real clear that you're not very cognitively capable, and I was not very cognitively capable. In the book, I document plateaus, new awareness, and new abilities to associate complicated ideas so that I could actually function again as a normal human being. For me, it was a full eight years.
So don't put people in a box and say the brain is done, because the brain isn't done. The brain is capable of changing moment by moment; let's work with that and continue to try to increase the quality of life. So many people will just believe whatever the doctor says, and as soon as the doctor says it's going to be six months and then forget it, the person thinks, "I'm not going to try anymore because the doctor says it's a waste of my time and energy, and this is the way I'm going to be the rest of my life." I hate that! I think we're all looking at the patient from the outside in, rather than from the inside out.
Did going through this experience give you a different perspective on DNR orders?
I found the absence of experience to be one of bliss. So I see death as a natural part of our cycle. And to embrace death without the fear of death is a gift to a person who is actually suffering -- not just someone who we project suffering onto. If they're capable of saying they want the DNR, that says to me that this person is tired and this is the end of the journey. Let's make this as peaceful as possible. If they're not capable of making that communication, then things get a little dicey.
Shortly after my stroke, the Terry Schiavo case came up, and I could really relate to Terry. And I thought, "It doesn't matter even if she doesn't have a cognitive thought going through her mind -- at what point do we as a society decide that this body, this collection of cells that is so different from what I'd define as a normal human being, is no longer worthy of life?"
Everybody would say, "Oh, I wouldn't want to live in that condition!" And I'd say to them, "You have absolutely no idea whether you'd want to live or not if you were in that condition. Because you're not you anymore, and the portion of your brain that's projecting all that fear no longer exists." So in a different level of consciousness, at what point is life a precious gift that we protect and at what point is it not? I have very mixed feelings on that.
Can you offer any solace to caregivers who are depressed when their parent isn't recovering from a stroke?
A friend of mine was reading to me from Tim Russert's book about himself and his father Big Russ and Me: Father and Son: Lessons of Life. There's a story about a man who lost his son at something like 19 years old, and he was very angry. And the question was posed: If God had said to you, "You can have a beautiful son for 19 years and then you're going to have to give him back -- do you want that deal or not? Do you want your son to be born or not?" And the guy said, "Absolutely. I want my son for 19 years."
I think it's the same with a stroke. Here you have a beautiful human being who is no longer in a totally viable, normal condition, but that doesn't make them less beautiful for what they are as a living being. As soon as your left hemisphere places the judgment that this is a negative situation or an imposition, then you hook into all of the negativity. But you do have the choice of saying, "This person has been a gift to my life, and there are lessons for me to learn from being patient, calm, and loving. Here's my opportunity to grow as a human being and stretch myself away from my impatience and negativity."
The mother of one of my best friends was dying of cancer that had gone to her brain. She was totally delusional and throwing a fit one day because, she said, the neighbor boy was in the kitchen cooking pasta and making a mess. I was thinking that my friend had to tell her mother that this wasn't happening. But she started laughing and said, "Oh, that was just Monty. He's cleaned up and gone!" And they moved on. I would never have thought of that -- just go with the flow, don't look for the clarification because at this point clarification doesn't matter. Go to the reality of the person and identify what this person needs in this moment.
For you, a stroke was a gift. Do you think it can be for most people?
I think any kind of serious physical illness can be a real eye-opener to the gift of life, the treasure that our relationships are, how precious little time we have, and what's really important. Instead of the left-hemisphere "Woe, why me? I'm a victim" thinking, it can be "Whoa, my time is precious little. What am I doing with it and what do I really care about and how do I serve my soul's purpose?"
Can you describe that feeling of bliss that your stroke brought on, and how you're able to hook into it now?
I know that I have a choice in how I look at any situation, and I can create tools that help me recognize when something is stimulating my stressful circuitry. I feel my anxiety and my body pumping up, and it doesn't feel good physically. What do I need to do to step to the right of that? For me, it's coming to the present moment by getting back into my body -- going for a walk, changing my visual scene, and thinking about what I'm looking at. Often I'll sing a song, a very soft melody that's slow and simple, because for me it's an issue of escalation.
My anxiety and stress circuitry runs fast and I can feel that, so I'll consciously choose to shift into something slower. And when I consciously shift into a slower thought pattern, there's just this incredible absence of urgency, of stress, of thinking about all the things in my life that give me stress. A deep inner peace pervades me. There's a celebration of life -- a joyfulness. It's a beautiful experience.
My Wife had a right side brain stroke, back in Nov. 2017, she has recovered to the point that for the most part she can: dress, wash, eat, and understands conversation, and can read. However her speech still has a long way to go to get back to communicative level. The problem is; she is still have seizures, even though the Dr. have increased her meds to control this, she has no energy, and seems to be very feeble. I make sure she feels loved, help her with her speech thearpy, we laugh a lot. It is not easy being a caregiver, and I am reaching a point where I think I am needing some kind of support. I just retired 3 years ago, and now it like I have a full time job that requires me to stay focused 24 hours a day, as I manage EVERYTHING which I will continue doing as I made a promise 21 years ago that I would take care of her, no matter what. I simply want to know how I can continue doing this and still fulfill my own needs, wants, dreams, in these last years of my life.
August 15, 2017 my 21 year old son had two strokes during placement of shunt due to, previously undetected since birth, Hydrocephalus. At two weeks of not awakening the doctors called a family meeting and stated they did not know why he is unconscious and that since two weeks have passed it is likely he will not regain consciousness again. I could not comprehend any of this and informed them we will all continue vigorous treatment and support. It is now September 24, 2017. Wesley just turned 22 yesterday. He is showing strong neurological withdraw in limbs, He followed doctors light and voice with his eyes today. I am looking to purchase your book right now online. Thank you for sharing your story. Paula
This article is very good. I haven't finished the book yet but I did get it. I am hoping it will give me insight for my mother who had a stroke not long ago. Thank you.
I had a Stroke level 8, Intercranial (Brain) Hemorrhage of my Basal Ganglia, in March 2009. After 2 years on my own path, I owe MY LIFE to Chiropractic, Nutritiional Supplements, and to Hyperbaric Therapy.
Very moving! and informing! Kudo's to Dr. Taylor for her adapting her story to the world!
Excellent - there is always hope and many times people give up too easily. I like what she said about the medical care. My father had a stroke and the care was terrible! Nurses trying to force him to feed himself and he couldn't even lift his arm. I went through a stroke clinic just to learn more and it was helpful, but this article is wonderful! Again, we give up much too soon!
Your story is very touching, my mother too suffered a stroke that affected her left side arm, hand and leg. she was told by doctors that she will never walk or be able to use her left arm again. and i think that has kept her in the negative side. we family members try to give her hope that someday she will walk again. it's been almost 2 years this coming march that she had her stroke. has made some improvement in her walking. currently she is in a nursing rehab center and i am strongly thinking of taking her home and care for her myself and hopefully gave sisters to help. your relationship with your mother reminds me of mine with my mother. thank you for sharing your story. i have asked family members to read it as well. thanks again. ana from houston, texas
Terry Gross interviewed Jill Bolte Taylor on her radio show, Fresh Air. The link is http://www.npr.org/templates/story/story.php?storyId=104154403.