Episode 175 – Identity Theft: Rediscovering Ourselves After Stroke

Being able to speak and write were central to Debra Meyerson’s career as a tenured professor at Stanford University, where her work revolved around diversity, gender, identity and organizational change.  But when she suffered a severe stroke that nearly killed her, the career by which Debra defined herself was gone – cut short by her stroke.  Jana talks with Debra and her son Danny Zuckerman, co-authors of the new book, “Identity Theft: Rediscovering Ourselves After Stroke,” an account of Debra’s extraordinary efforts to recover and her journey to redefine herself after her traumatic event.  “Identity Theft” also includes stories of fellow stroke survivors and highlights the emotional journey in recovery and what family members and partners go through.  The authors share how their family’s lives changed as a result of Debra’s stroke and talk about the hard work needed to regain everyday capabilities.  All proceeds from the sale of “Identity Theft” will be used to fund a new nonprofit initiative called Stroke Forward.

Website: Stroke Forward and “Identify Theft”
Additional resource: CaringBridge

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Got a story to share? Email us any time at jana@agewyz.com

 

 

Music: “Burning Light” by Ketsa | CC BY NC ND | Free Music Archive

 

INTERVIEW TRANSCRIPT:

JANA PANARITES (HOST) – In September of 2010, at age 53, Debra Meyerson experienced a severe stroke that nearly killed her and initially paralyzed her left side. The stroke also robbed Debra of all speech –  central to her career as a tenured professor at Stanford University, where she studied, wrote, lectured and taught about diversity, gender, identity and organizational change. Debra’s book “Tempered Radicals: How People Use Difference to Inspire Change At Work,” published in 2001, is still widely used by diversity and inclusion experts. But the career by which she defined herself is gone – cut short by her stroke.

JANA – In fact, each year about 800,000 people in the United States experience a stroke. It’s the leading cause of long-term disability in the United States, and it afflicts the young, old, wealthy and poor. Following her stroke, Debra underwent eight years of intensive therapy. That and her relentless work ethic has enabled her to regain her independence. She still lives with physical limitations and some speech challenges. But Debra’s intellectual curiosity and lifelong goal of spreading knowledge eventually led her to sharing her journey of recovery in a new book titled, “Identity Theft: Rediscovering Ourselves After Stroke.” The book is co-authored by Debra and her son, Danny Zuckerman. Danny is the co-founder of 3Box, a peer-to-peer social network that helps people create more meaningful connections and communities online. Both authors of “Identity Theft” are here with me to talk about their fascinating new book and I could not be more thrilled to welcome them both from Lake Tahoe. Danny Zuckerman and Debra Meyerson, welcome to The Agewyz Podcast.

DEBRA MEYERSON – Thank you.

DANNY ZUCKERMAN – Thanks for having us.

JANA – So you probably get this question a lot, But perhaps one of you can take us through what happened. As I mentioned in the open, Debra you were 53 when you had your stroke, I understand you had just dropped off your middle child at college, correct?

DEBRA – Yeah.

JANA – And you were heading to Lake Tahoe when you had this, what you call “a slow fall off a cliff” starting on the drive back right?

DEBRA – Drive up.

JANA – On the drive up. Right – on the drive up to Tahoe. Did you drive from Boston, where you dropped off your son?

DEBRA – No, Stanford.  I feel really bad.

JANA – I see.

DANNY – So she was back at Stanford and feeling a bit off, and we drove up to Tahoe, and she initially lost feeling in her  right leg.

JANA – Right. Well, Danny, what do you remember about Debra’s hospital stay at – is it the Renown Hospital in Tahoe?

DANNY – Yes.

JANA – that whole process…what do you remember about that?

DANNY – Yeah, I mean, the slow fall off of a cliff is a pretty apt metaphor. So we had come up to Tahoe, she had lost feeling in her leg, we didn’t really think much of it. The next morning, she started to have a bit of issues with her arm as well. We went to the local clinic, they did a few tests and sent us over to the hospital. When we got there, all seemed not great, but fine.  She was still talking pretty normally. She told her mom and brother and my brother that she was fine, from the hospital. But overnight, things just kept getting worse. And same thing the next day. And by the following night, she was basically immobile and mute. So it was one of those things where it felt like a week of kind of every check-in things were worse, but it happened very quickly in retrospect.

DEBRA – Yeah.

JANA – And you were mute for three weeks as I understand it, Debra, when you were transfer to your fourth hospital to undergo acute rehab, and I was so fascinated by the story of Danny, you hearing her blurt out her first clear word. Tell us about that moment – the “you” in Happy Birthday – or Debra, either one of you.

DEBRA – Reno is the first hospital, and the second hospital is Stanford – two weeks of ICU.  And the third hospital is Santa Clara Medical Center. And this Happy Birthday is my… yeah,

DANNY – So, my mom just gave a, like, very abridged version of the full story and where they happened. So she lost her voice at the Reno, Renown Hospital, was transferred to Stanford where she was in the ICU for two weeks. And that’s where she lost basically all sound – for at least a week couldn’t even make a sound. Coughing, sneezing, grunting, nothing would come out. And this whole time, no one in our family knew anything about stroke, really. So we were learning on the fly, how something like this can happen.

DANNY – And she regained the ability to weakly cough a little bit, but still no speech of any kind when she was transferred to the rehab hospital in Santa Clara and had her first speech therapy session. And that was were like, again, completely unknown to us the difference between speech and song, but the speech therapist there started humming a nursery rhyme and getting my mom to hum along, which she was kind of able to do, and then switched to words and singing some nursery rhymes. And we were all kind of shocked to find that despite the fact that she couldn’t make any words, including her name twenty minutes before, she was able to sing along a nursery rhyme because song is on the right side of the brain instead of the left. And that was one of the key therapies and strategies to unlock some of her speech.

DEBRA – Yeah. And one year after my stroke, I was going to Boston for four months of therapy, one hour and a half every day [of] intonation therapy.

JANA – You had a lot of intensive therapy. I was amazed at your dedication to your recovery. But on the other hand, it didn’t really surprise me because you were an athlete, you were very active, very determined, very achievement oriented. So I should think that really helped you in your determination to recover. How do you think your determination to succeed in other areas of your life helped in your recovery?

DEBRA – Really a lot. Athletes and music, and I am not a singer.

DANNY – Yeah, one of the things we talk about in the book is there being kind of three different ways and three phases where that kind of determination plays into the recovery. The first is, one of the survivors talked a lot about her kind of blind determination right after the stroke [as] being a way in which she was able to keep a positive attitude and really attack the therapy and the rehab with determination, and not be too upset by the situation. And so it was almost a healthy denial really early on.

DANNY – There is a phase after that, that I think my mom went through as well, where sometimes that determination – if pointed at recovery as it’s often thought about in terms of regaining all of your old skills and capabilities – can actually be a little bit unhealthy or unhelpful, because that puts you in the mindset of looking back at what you lost. And so if you’re really, really attacking the deficit and looking back at what you need to regain, when sometimes that’s not possible or not the right goal, that can actually be a little bit harmful.

DANNY – But the third phase is, do you think about recovery in a different way, which is rebuilding a meaningful life. And maybe that’s with a different set of capabilities and reduced skills or mobility, then that determination is what lets you reframe your values and really work towards a new set of skills or capabilities or lifestyles or careers. And my mom and the other survivors often kind of traverse that journey.

JANA – Well, that really dovetails with the whole concept of identity that of course, Debra spent so much of her life researching and writing about – this whole concept of self-image, and the meaning of identity and reframing your identity. So, Debra you made the point that after a stroke, everyone experiences a shift in self-image in their own way. After your stroke, you felt broken. This concept of feeling broken comes up over and over in the book.  You became “a teacher without words,” which was so moving, I wonder if you can comment on this idea of disrupting the continuity of the narrative you’ve constructed for yourself.

DEBRA – Three years after my stroke, I am really trying to return to the classroom. And three years after my stroke, I am really not better. And my husband and I  – tenure.

DANNY – When you lost tenure?

DEBRA – Yes.  Yeah.

DANNY – Yeah. So I think what she’s getting at too is, for my mom recovery and her identity as a professor were so intertwined because it was that piece of her identity that she was using as motivation in her rehab – to get back that piece of her identity. And so losing that was a huge blow, and really required a complete rethinking at that point of who she was. And that was the disruption in the continuity of herself. And that was maybe the toughest point in her recovery, and what led to a lot of the reframing.

DEBRA – Yeah.

DANNY – And so eventually this book.

DEBRA – Yeah.  Three years, Sally Collins and I wrote the book.

DANNY – Because it took a long time to write the book?

DEBRA – Yeah. And Danny and I took two years extra.

DANNY – So it was a five-year process to write the book. My mom worked with a ghostwriter, Sally Collins for a few years doing a lot of the interviews, research and putting together the initial structure, and a first draft manuscript, through that learned a lot about the recovery, my mom’s journey and the messages, because the book was a learning process, as well as teaching and sharing process. And then the last two years have been reconstructing the book with the themes that are eventually in there.

JANA – Well, on the subject of the writing process, maybe one of you could talk a little bit, or both of you, about the challenges of writing and interviewing more than 50 people for this book, in spite of Debra’s speech disabilities. How was this working, from before you came on board, Danny, and then afterwards?

DEBRA – Sally Collins and I researched the interviews, and Danny and I reconstructed interviews.

JANA – Oh, you reconstructed it.

DEBRA – Yeah, yeah. And Steve, my husband really was a writer too.

JANA – Right.  It was a real family effort, is the way you described it. Yeah. And it’s nice that you were able to draw on a lot of material from Caringbridge.org. I don’t think a lot of people know what Caringbridge is.  Maybe you could share the organization. Danny. What is the purpose of Caringbridge?

DANNY – Yeah, so it’s a site that allowed us to post updates on my mom’s journey for all those friends and family and others around us who wanted to know what was going on, but maybe didn’t want to be reaching out directly to us, because that creates a bit of a burden on the loved ones around someone who’s suffered something. And so it’s basically designed to create community and support around not just the survivors or the people going through really difficult issues, but the ones immediately around them. And so for us, in particular for my dad, it provided a bit of a cathartic outlet, to be able to write updates every couple of days on my mom’s progress, especially early on, and then to have just an outpouring of support from those around us.

DANNY – And one of the things that is so critical in the recovery is the layers of the support network. And so obviously our family was the closest support right around my mom. And then her close friends really, were just amazing supporters as well. But then each of us had our own friends and family supporting us as we went through the difficulties of having our mom or wife or daughter go through this and the challenges that came with that. And Caringbridge was really a critical piece of that. And when my mom was kind of recovering a few weeks in, enough to make sense of what was happening around her, my dad read some of the messages that people had shared. And that was like a huge lift for her.

JANA – I can imagine.

DANNY – And we heard about Caringbridge from someone else who had gone through something similar, and it’s a great way for people to, online, build their support network.

JANA – Your family went on quite an emotional journey as a whole and I wonder if either if you can comment on how your relationships changed, and how you changed?

DANNY – Yeah, so it kind of happened on two levels.  I think each of us individually had to change quite a bit. For myself, I think I actually had it the easiest of anybody. I was 21, at the time and at school very nearby, at Stanford. So I had the benefit of being both very close by but then also with all the distraction of school and friends and class and graduation and finding jobs. And so I mentally had a lot of support around and also the ability to both be in and out.  And it definitely forced a growing up and a speeding up of, I think, the natural evolution of any parent and child from parent-child to more, peers.  So especially working with my dad and helping him, and being another person that was at least more adult around and going through it similarly.  My brother was across the country and had to deal with that. My sister maybe grew up the fastest and was – because she was 14 at the time? 15?  She was in high school.

DEBRA – A sophomore in high school.

DANNY – She was a sophomore in high school and the only child left at home, so she was dealing with it daily, and didn’t have her mom as she went through her teenage years. And she handled it amazingly and was probably the first of all of us to put together in words, extremely articulately, what she had learned from it and how she had grown. And that’s how we started chapter, I think ten.

DEBRA – No – nine.

DANNY – Nine.  And one of the things we talk about is the family unit changes, not just the individuals, but the way we interact. That happens.  In some ways they’re surface but important in terms of the activities we do together as a family, but also just all the assumed roles and responsibilities and what we expect of each other. And I think that happens over time. Some families really struggle with that process. But we talked to a lot of other survivors and their families and caregivers who became much closer through the process.

DANNY – And while there’s additional challenges, there’s also a lot of joys of being there for someone that you love. And the increased responsibility makes you realize things. And Adam Grant and Cheryl Sandberg talk about pre-traumatic growth for people, which is something we saw, which is, if you don’t have a trauma but you’re very close to someone who does, you can learn a lot of the lessons about perspective and values that they’re going through just by being near it, which I think also happened.

JANA – Yeah. Debra you wrote, “there really are some things that are better since my stroke,” which was really wonderful to read.  And I’d like to know what’s better for you now?

DEBRA – I really laugh a lot. And then, I am really hungry – a lot.

[laughter]

DANNY – You enjoy eating more?

DEBRA – Yeah.  Yeah.

JANA – Maybe you take time, now, to eat?

DEBRA – Yeah.  Yeah.  And I am happy about family and friends.

DANNY – More appreciative?

DEBRA – Yeah.

DANNY – I think the frustration is way, way higher now.

DEBRA – Oh, yeah.

JANA – The frustration, did you say?

DANNY – Yeah. But in some ways [the] stress is much lower.

DEBRA – Yeah.

JANA – Hmm.  That’s interesting.

DANNY – And I think the perspective that comes with this experience makes her laugh a lot more, enjoy the present moment, including food a lot more, appreciative of time with family and friends. And as a tenured professor and very type-A,  there was a lot of stress previously.

DEBRA – Oh, yeah.  Yeah.

DANNY – And it made that harder.

JANA – Yeah.  Well, in some ways I can maybe guess what the frustrations are, but I would like to hear in your words what you see as the frustrations now, Debra.

DEBRA – My arm and my talking. I am talking slowly, and I am not able to make sense of it. And aphasia is really difficult. Really difficult.

JANA – Aphasia.

DEBRA – Yes.

DANNY – The way that aphasia works – and it’s honestly sometimes hard to fully understand or kind of fully empathize with even after nine years of being right next to it – is, my mom’s thoughts are very clear in her head. There’s a great quote from one of the survivors that’s, “I don’t have aphasia when I’m alone.”  But the connections in the brain that translate those thoughts into words are just broken.  And so they just don’t come out. And so there are constantly times, every day, where my mom has a lot to say and can only get out a couple of words that generalize the direction of what she’s trying to say.

DEBRA – I am really frustrated. Really frustrated.

JANA – Yeah.  Well, of course – you’re a professor and a very accomplished professor. That’s no surprise to me. This is well- illustrated in a story in the book where, at your husband Steve’s graduation school reunion, the subject of charter schools was being discussed and you were “silently fuming” because there were points you wanted to make based on your research about the impact of philanthropy on charter schools, but you couldn’t find the words. That was a brilliant, brilliant example. And I’m so glad you shared that.

DEBRA – And I am frustrated once a day.

JANA – Once a day.

DANNY – Yeah, something like that happens.

DEBRA – Yeah.

DANNY – I will say that my mom, in the absence of speech, has taken communication through body language and facial expressions to very impressive heights.  I think we see that a lot.  There are a hundred ways to get across at least general ideas.  And whether that’s through body language or through tools – she dictates a lot of things and tracks through her iPhone – so there’s a lot of strategies to try to communicate, but that doesn’t do much to ease the frustration.

DEBRA – Yeah.

JANA – Yeah, I can imagine. Now, Danny, are you living physically close by? Or where do you live now?

DANNY – I am back in California a decent amount, but I’m in New York City now.

JANA – You live in New York City. Okay. So what does a typical day look like now, for Debra?  Either of you can share this.

DEBRA – Two days of the week are therapy days, and I am writing and dictating, and really a lot of emails.

DANNY – How much time do you spend in getting ready, stretching?  About how much time?

DEBRA – One hour and a half, every day.

DANNY – Just to kind of stretch out her arm and warm up and be mobile, is about an hour and a half in the morning of prep for the day.

DEBRA – Yeah.

JANA – Uh huh. Now, are you able to write with your right hand? Or do you write on your computer?

DEBRA – My right hand is not working.

JANA – Not operable, okay.

DEBRA – No, writing is the same.

DANNY – Yeah, so the aphasia comes through in writing as well. And so my mom mostly will either type with just her left hand, she’ll respond to things a little bit, or she will dictate through Siri or the computer.  With kind of a few repetitions and practice of what she’s trying to say, she can usually get out a particular sentence.

JANA – Well, I’m getting a little bit off course here, but I’m really interested in this idea that you can’t talk as well as you want to, but you can think clearly. So in the writing, are you able to convey what you’re thinking through the writing easier than you are able to convey it in the speaking, I guess, is my question – if that makes.

DEBRA – No.  Parts of the aphasia, I will dictate…

DANNY – Do you want me to… ?

DEBRA – Yeah, yeah.

DANNY – The aphasia – it’s not speech aphasia, it’s expressive aphasia.  And it’s, you know, equally hard for her to pick out the right letters for a word that she’s trying to write out as to sound it out speaking.

DEBRA – Yeah.  And I dictate five emails a day,

DANNY – So she dictates through her phone or computer, responds usually.

JANA – I see.

DEBRA – And then other people are – aphasia – are global aphasia and…

DANNY … receptive. So there’s various types of aphasia that survivors have: global aphasia, receptive aphasia, expressive aphasia…

JANA – It’s so interesting you know, there’s such a natural inclination for people to want to help, but be unsure of how far to go. I was really fascinated by this idea of, “supporting the journey often means letting us struggle,” is how you put it.  It gets to this point, which I really liked, that you make, about how “what can I do to help?” really puts the burden on the recipient, rather than, you know, on the person who really wants to help. So maybe one of you could suggest a constructive way of people who would like to help, being helpful in a situation like this?

DEBRA – My husband, and I –

DANNY – this has to do with how people can help?

DEBRA – Yeah.  Steve wants to help, and is not sure about the right way.

JANA – Now, is this chapter 10, “Partners and Intimacy”?  Is that what you’re referring to?

DEBRA – Yeah.  Yes.

JANA – Okay, for folks who are listening and want to explore that.  Did it take you a while to learn how to help, Danny?

DANNY – I think so. And I think going through this made me realize how unhelpful I’ve been to others who I’ve met, going through things before. So I think it’s trying to suggest ways to be helpful proactively, rather than putting the burden on the person you’re trying to help, to say how.   It’s also just, small things can go a long way. So expressing sympathies in the right way, or support more than sympathies, I think maybe the biggest thing is being very aware of the person in totality, rather than just the situation at hand.

DANNY – There’s things about my mom’s life now that are all about stroke and recovery and rehab, but then there’s a whole lot more, too. And so when people kind of don’t take into account the other goals like enjoying family time, or the long-term retraining of what she’s trying to do in Independence, but just try to help to kind of go [unintelligible] of clearing the dishes or something, that gets very frustrating.  And so there’s different – from very tactical to very kind of big picture, of ways to be more understanding when you’re trying to help.

JANA – Mm hmm. Well, maybe we can talk about Stroke Forward, this wonderful initiative that Deb, you and your husband, Steve started. A little bit about its mission and future plans for the organization.

DEBRA – Yeah, the medical and occupational and physical therapy is one thing, and the social work and psychology is another thing.  And medical patients, Steve and I want to help social…

DANNY – So the organization will certainly support general stroke awareness, of which there’s always a need for more.  The more unique focus will be on recovery, not just as the physical and occupational and speech rehab, but also on the – really thinking about what is a meaningful life and building that psychological and social life after stroke.

DANNY – And one of the things in the book that we talk about is reframing recovery in terms of not regaining lost capabilities, but instead rebuilding a meaningful life. And so that element of looking forward at the future, not backwards at what’s been lost, is really the theme of the awareness and support efforts of Stroke Forward.

DEBRA – And I want to help figure out medical diagnosis and psychology.

DANNY – A lot of – I think this was what my mom was trying to say – a lot of stroke survivors have depression or other psychological issues, but they often aren’t really talked about. Therapy is really rarely recommended for stroke survivors, despite an extreme need for it. And so adding that psychological element to the medical aftermath is another goal.

DEBRA – Yeah.

JANA – Right. You talked about the lack of resources for the emotional piece of recovery, which, as I understand it was a large inspiration for the writing of this book.

DEBRA – Yeah.  Yes.

JANA – You had you had other resources, but not so many emotional resources.  Debra, you wrote, “for our entire lives, we have been building narratives about who we are. And yet no one has a single static identity, it shifts along the way of a gradually sloping path.”  You were jolted from your path eight and a half years ago and you chose where to go next.  In the process, you’ve rediscovered and, as you say, “reconstructed who I am, post-stroke.”  So my question is, who is Debra Meyerson today?

DEBRA – The same person and a different person.  Really the same person and a different question.

DANNY – You want me to add some?

DEBRA – Yeah. Yeah,

DANNY – Yeah. So at, like, a very deep level she still feels like the same person.  She still values a lot of the same things: spreading knowledge and being a mother and wife and friend, and being athletic and in shape and healthy. But she’s had to find new ways to express each of those underlying values.

DANNY – So she doesn’t spread knowledge anymore as a teacher, but rather through this book and Stroke Forward. And her role as a mother and wife have shifted to different ones, with more limitations.  And her athleticism is now less, you know, extreme downhill skiing or running, and more time at the gym or doing tandem bike riding with my dad.

DEBRA – And walking and hiking and scuba diving and sailing… skiing…

DANNY – Skiing is a struggle now, but can still be done with a lot of prep.

DEBRA – Yeah.

JANA – Yeah, that’s great.

DEBRA – And…

DANNY – Swimming a little bit.

DEBRA – Yeah, yeah.

DANNY – So it’s really been about a discovery of what values are really underneath the surface descriptors that used to exist, because many of those had to change because they were out of reach, and finding those new roles, those new activities that could express the same underlying values.

JANA – Sure. Well, I want to let you guys go, unless there are any other thoughts that you’d like to express. Is there anything else that you’d like to discuss that we didn’t get to?

DEBRA – Three weeks ago, I and Steve did a talk.  L.A.

DANNY – My parents did a talk at my grandmother’s retirement home –

JANA – oh, that’s awesome –

DANNY – in L.A., a few weeks ago and found that the messages in this book and in their talk were extremely resonant among the residents there. And we found that more broadly, that while the middle section is very much about the stroke recovery or brain injury recovery process, the messages around identity and reframing who you are as your capabilities change, resonate with people as they go through illness or aging or just grow through life.

DEBRA – Yeah.

JANA – We’ve been speaking with Debra Meyerson and her son Danny Zuckerman, co-authors of “Identity Theft: Rediscovering Ourselves After Stroke,” a book full of hope for survivors that centers on Debra’s experience of her stroke, her extraordinary efforts to recover and her journey to redefine herself. The book is truly engaging. It’s chockfull of resources and it provides realistic expectations for the hard work needed to regain everyday capabilities – for many people, not just those who’ve experienced a traumatic event. Perhaps most importantly, it highlights the emotional journey in recovery and what family members and partners go through. “Identity Theft” revolves around Debra’s story, but it also includes stories of fellow survivors because as she and Danny note, every person is different, every stroke is different and every recovery is different.

JANA – “Identity Theft” is available in print and as an audio book, so if reading is a challenge, you can always listen to this book. All proceeds from the sale of “Identity Theft” will be used to fund a new nonprofit initiative called Stroke Forward. To learn more about “Identity Theft” and Stroke Forward, go to stroke-forward.org. That’s stroke hyphen, forward.org, which we will link to on the Agewyz website.  Debra Meyerson and Danny Zuckerman, thank you so much for this powerful and inspiring book and for being on the show. I really appreciate your time and your thoughts.

DEBRA – Thank you – a lot.

DANNY – Thank you so much for having us on.