Today in the United States, over 800,000 people experience a stroke each year, and more than 7 million Americans are living with the aftermath, including actors Sharon Stone and Emilia Clarke, singer Randy Travis, and retired NFL star Tedi Bruschi. Millions more are affected worldwide.
For former Stanford Professor Debra Meyerson, her journey wasn’t just about regaining physical abilities. In her 2019 book, ‘Identity Theft: Rediscovering Ourselves After Stroke’, she chronicled her courageous battle to regain physical and emotional strength after her 2010 stroke left her incapacitated and unable to speak. Beyond the physical challenges, the book explored the often-overlooked emotional journey of reconstructing one’s identity and meaning in life after such a life-altering event.
And now she has released a new edition of the book, ‘Identity Theft, Second Edition‘, co-authored with her husband and care partner, Steve Zuckerman, looks deeper into the ongoing and chronic nature of stroke recovery and highlights the work of Stroke Onward, the nonprofit they co-founded, which is dedicated to transforming stroke care by integrating support for rebuilding identity and the broader emotional journey critical to a successful lifelong recovery after a trauma like stroke.
Below is an excerpt from the new edition, published here with permission. A powerful and insightful story of resilience
The second sentence of my 2001 book, ‘Tempered Radicals’, asks, “How do members of an organization express identities and values that are different from the majority culture while fitting into that culture?” For years, I had studied how people can effectively align their internal selves—how they define themselves—with the roles they play and the environments in which they play them.
My work explored how people drew on different parts of their identities—their gender, race, attitudes, and values—to define and shape the world around them. I spent time on an oil rig, living in one of the most macho cultures imaginable, working with a leader who coaxed his men to be more vulnerable and communicative to make sure they stayed safe. I worked with feminist surgeons trying to balance what it meant to specialize in the male-dominated surgery profession with what it meant to her to be a woman.
Even those who study identity academically have trouble defining the term, and they often don’t agree with one another. Psychologist Erik Erikson, famous for his theory on psychological development, wrote, “The more one writes about this [identity], the more the word becomes a term for something that is as unfathomable as it is all-pervasive.” Often, we think of ourselves as having a single, all-encompassing identity. This isn’t how we actually live our lives, though.
Identity is multiple, dynamic, relationship-based, and interpretive. We are constantly evolving, and so are our identities, both informing our choices in life and being informed by them. We each hold many values and exist in many contexts and dimensions that shape our lives, and so we all have various identities that are constantly interacting.
Writers and educators Sharon Anderson and Kyle Whitfield offer a definition based not on what identity is but how it’s constructed: “Personal identity is developed within social transactions where self-perceptions and possible identities are negotiated with others.”
We live in a complex, ever-changing world. To help ourselves navigate this, we create narratives and generalities that give our path through life coherence. Among these are our senses of identity. It is not feasible that, given the complexity of our lives, we would have one single, holistic identity. As Walt Whitman said, “Do I contradict myself? Very well, I contradict myself. I am large, I contain multitudes.” It is inevitable that we will have a dynamic sense of identity, carved in various contexts and relationships.
Psychology research has shown repeatedly and powerfully that harmony among our various identities can be emotionally beneficial. When there is no clash between how we think of ourselves and how we present ourselves in various situations, we are happier and more resilient. If there is a disparity, we become stressed or even distressed.
Sometimes, we encounter this in relatively subtle situations. How do you proceed when a colleague that you consider a friend is not performing? What do you do when an important and unforeseen need at work would force you to break a family commitment? Do you dress according to professional norms or in the attire you find expresses yourself and keeps you comfortable?
These decisions, even seemingly minor ones, stress us because we are trying to simultaneously live in accordance with two identities that are both important to us but which clash. We all deal with these situations of competing identity, though often in fairly mild ways and without realizing it.
My stroke took this dissonance to a whole new level. “Brains give rise to our ability to form relationships and make life meaningful. Sometimes, they break,” wrote neurosurgeon Paul Kalanithi in his bestselling autobiography, ‘When Breath Becomes Air’. Along with destroying brain tissue, stroke can obliterate the continuity of the narrative we’ve constructed around the activities, relationships, and aspirations we’ve spent our lives building. It made me feel that many of the things I define myself by were now false.
I’m a professor, yet I cannot speak. I’m independent, yet I need a tube to eat. I’m an athlete, yet I cannot walk without support. I’m a mother, yet my kids are comforting me. I’m healthy and active, yet I’m stuck in the ICU. Before we recover or rebuild, we are left mostly alone to face an image of self we no longer measure up to. Dr. Kerry Kuluski and her colleagues from the Institute of Health Policy at University of Toronto describe this as a “discredited notion of self.”
I was stubborn about confronting the changes in my life. It wasn’t until three years after my stroke, forced to give up my professorship at Stanford, that I reluctantly had to accept that full physical and speech recovery might never happen for me. Until that moment, I had worked furiously to recover my old life, and returning to teaching was a critical part of that. My vocation wasn’t just a job to me. I had spent a huge part of my life creating and spreading knowledge about social issues around diversity, gender, and identity.
I cared deeply about these topics, had built expertise and reputation in them, and worked my ass off to carve out a career researching and teaching them full time. The tempered radicals I worked with inspired me with their commitment, clear-headed belief in a cause, and ability to balance multiple goals. I had grown to consider myself part of that community.
A huge piece of my own identity was derived from this. I had trouble coping with losing this, even in the short term, and had refused to think about losing it more permanently. The realization that I could no longer be part of that world was a new trauma.
“One of the reasons that trauma is so devastating is because of its impact on individuals’ beliefs about who they are and who they can become,” wrote my friend and colleague Sally Maitlis, an identity expert and professor at Oxford. “The negative emotion generated by a trauma signals the loss of or damage to a significant aspect of self.”
Complex and scary emotions started swirling in my head at about this time. I started to ask myself, explicitly but silently, whether I had lost essential parts of life. I was not a tenured professor anymore and probably never would be again. I was not a fully able-bodied person. Would I be able to sail and ski again?
Would family vacations be limited to comfortable road trips rather than new adventures? I was committed to keep working on my recovery and believed I would keep getting better (and I have). But I started, ever so slowly, to accept that all the work in the world might not get my old life back. And I began to wonder, “If that is the case, who am I now?”
A chapter in ‘Tempered Radicals’ is titled “Turning Personal Threats into Opportunities.” The first section of the chapter is called “Recognizing Choice.” It deals with ways to escape feeling trapped by a difficult situation and develop other responses and perspectives. It can be hard, especially when the situation seems hopeless, but the people and organizations I studied had provided many examples of how it could be done.
One of the strategies described was Seeing the Complex Self. Nine years before my stroke, I wrote, “It is important to remember that we can evaluate other aspects of the situation and choose how best to respond rather than feeling forced to defend a singular ‘true self.’”
I started to realize I had been asking the wrong question. I was evaluating my future against the identities I had built for myself based on the past. Maybe I needed to look at myself a bit more deeply. Not only my capabilities and what I had done but more fundamentally my values and what I really cared about. My identities lived not just in my accomplishments but also in the underlying drives that pushed me toward them in the first place. Rather than “Who am I now?” I could choose to ask myself a different question: “Who do I want to be now?”
