Rebuilding Identity & Rewarding Lives after Stroke

Debra Meyerson and Steve Zuckerman, Co-Founders of Stroke Onward, will be hosting a live webinar with Care Indeed on October 1, at noon. To register for the event, please visit https://careindeed.info/33k0Nm7

By Debra Meyerson and Steve Zuckerman

As we write this article in early August, we are enjoying the last week of a 3-week cycling vacation.  A good way to enjoy the great California weather and scenery -- especially during this uniquely difficult time of COVID-19 and social distancing. But cycling is a very different activity for us than it used to be -- as we also are approaching the 10th anniversary of Debra’s severe stroke that changed our lives.

We’ve learned a lot these past 10 years.  How hard the recovery process really is.  What life with disabilities is really like.  How much you can lose when you suffer a trauma like stroke.  How much it affects the entire family, not just the person who had the stroke.

Most importantly, we’ve learned that the emotional journey after stroke is just as important as the physical journey.  That the real goal of recovery is to rebuild one’s identity and a rewarding life, not just regaining lost capabilities.  That realization came during the 5 years that we (Debra as author, our son Danny as co-author, and Steve as “unnamed co-author” -- as noted in the dedication) wrote Identity Theft: Rediscovering Ourselves after Stroke (Andrews McMeel Publishing; May, 2019.)

From the introduction of Identity Theft:

“My name is Debra Meyerson.” In 2009, this was a casual self-introduction at the beginning of a lecture at Stanford University. The tone was strong and authoritative, five words opening the door to thousands more over the course of two hours as I confidently led a class through a presentation and discussion about topics like gender, diversity, social change, and identity.

“My name is Debra Meyerson.” In 2011, this same phrase comes out weak, a faltering melody with an almost nursery-rhyme cadence. The five uneven words are an achievement, the result of a year of speech therapy. A severe stroke in September 2010 robbed me of all speech, and after a year of intensive therapy, my own name still gave me trouble. In times of stress or fatigue, I still fall back on singing the phrase, using a melody to unlock the words.

“My name is Debra Meyerson.” Who is Debra Meyerson now, in 2018, as I write this book? I am alive, and for that I am lucky and grateful. I live with significant disabilities: no functional use of my right hand, a significant limp, and significantly diminished speech. I can say my own name, and much more, but at times I still struggle to find the simplest of words. This brings me to laughter on my good days and tears of frustration on the bad. I cherish the same values, love the same family, work with the same determination. But I can no longer teach, talk as easily with family and friends, or ride a bike on my own.

“My name is Debra Meyerson.” Strokes don’t just create physical and mental disabilities, they can also steal our identities. Much of my pre-stroke life became inaccessible. Understanding and accepting the loss of my old life was one of the hardest parts of my recovery and rebuilding process. Along with the constant rehab and speech therapy aimed at physical recovery, I’ve spent the past eight years working to regain my sense of self, trying to answer the question: who am I now?

As a professor at Stanford’s Graduate School of Education and Graduate School of Business for fifteen years, I studied how personal identity shapes people’s experiences in their organizational lives. My first book, Tempered Radicals: How People Use Difference to Inspire Change at Work (since reprinted as Rocking the Boat: How Tempered Radicals Effect Change Without Making Trouble),examined people who maintained multiple identities and worked to align their personal and organizational lives. I had planned to continue this work, building and sharing knowledge about how each of our identities shapes our experiences and our environments. Had I been able to proceed with that work, perhaps I would now be publishing a book exploring how we can use a more complete understanding of our multiple identities to improve the way organizations handle difference and conflict.

Instead, I find myself grappling to understand my own identity. My stroke took away my capacity to work as I did before, many of my abilities, and many of the other pieces of the life I had built over five decades. Although my physical capabilities were erased nearly overnight, there was no analogous “identity switch” that signaled how my sense of self had changed. But over time, this change became clear. Activities I loved were out of reach; colleagues, friends, and strangers treated me differently; family dynamics changed dramatically. I even noticed my own attitude changing in certain ways.

I have gradually regained some of the capabilities I initially lost, and the recovery of my identity has been an equally difficult journey, one that took me about three years to even recognize. Following my stroke, I found numerous resources to help me understand my journey to recover physically, but there was a profound lack of guidance when I faced the emotional challenge of rebuilding my sense of self in this new and maddening circumstance. As I talked with other stroke survivors, I found this to be an extremely common frustration.

For many of us, clarifying essential elements of ourselves is critical to regaining capability and confidence, whatever physical challenges remain. As we try to restore parts of the identities we had before the stroke, we are also reinventing new ones—all the while grasping for tools to help us think about how our lives should be evolving. Do we stay determined not to let the stroke win and keep battling for more recovery? Or do we accept that we need to let go of our past selves? Or both?

One of the central themes of the book is the importance of building meaning and purpose into life.  And we are doing that through Stroke Onward -- a nonprofit we co-founded with a mission to provide stroke survivors, families and caregivers with more resources to help them navigate the emotional journey to rebuild their identities and rewarding lives.

To learn more about our work, follow our journey, or get involved in a way that brings you meaning, please join us at www.StrokeOnward.org and follow and engage with us on social media @StrokeOnward.