Author of “Identity Theft: Rediscovering Ourselves After Stroke” offers insights on reclaiming identity after brain injury

Who am I? To answer this question, we often reference our achievements as a reflection of who we are, as touchstones that give us place and purpose in the world, as part of our identity. In the wake of a life-changing event, like a stroke or TBI, answering this question can become even more difficult because of the wide-reaching impact the injury has on a survivor’s life.

Such was the experience of Debra Meyerson, author of “Identity Theft: Rediscovering Ourselves After Stroke”. A tenured professor at Stanford University, Debra was an academic dedicated to better understanding the social concepts that inform identity, but it wasn’t until 2010, that this work became integrated into her life in a much more dramatic way. Debra experienced a devastating stroke that immobilized the right side of her body and affected her speech. After three years of full-time therapy, Debra was still experiencing the communication constraints of aphasia and was forced to give up her professorship at Stanford. 

This career loss felt like a second, invisible trauma for Debra. She found herself deep in an identity crisis, which inspired the 5-year effort of writing her book, Identity Theft and founding Stroke Onward, a nonprofit dedicated to providing stroke survivors with resources to help them navigate the emotional journey of rebuilding their identities post-injury.  

We sat down with Debra recently to talk about why this work is vital, and where to start. 

Q: When writing Identity Theft, what was your working definition of “identity”?

A: While writing the book, we actually had trouble finding a single definition for “identity” that we really liked. There are dozens, if not hundreds out there in the literature.  We settled on one used by psychologist David Gergen: “one’s identity is continuously emergent, re-formed, and redirected as one moves through the sea of ever-changing relationships. In the case of ‘Who am I?’ it is a teeming world of provisional possibilities.”

When we talk about identity, we often talk about four things we think are really important:  :

• We all have multiple identities. Although we often describe ourselves in terms of the work that we do, it’s important to remember that we are more than just our work. We are parents, children, siblings, sports lovers, volunteers, etc. 
• Identities change.  We are changing all the time.  Right before my stroke, I was not the same person I was five years before.  My stroke changed me faster, but I was changing anyway.
• Identity is a social construct.  We are who we are in the context of relationships.  My relationships are instrumental to who I am, and were instrumental in re-building my life. Identity is a choice.  Instead of asking “who am I now?” I had to ask myself  “who do I want to be now?” 

Q: A life-altering event like a brain injury can strongly impact a survivor’s sense of self. What was your emotional state after your stroke? Did you at times feel like you were grieving your old self?

A: Yes, I absolutely had periods of grief and loss during my recovery. In fact, I dedicated chapter 7 in Identity Theft specifically to that topic. And truth be told, I am still grieving the loss of my old self.  In the book, I compared the feeling to losing my dad — I’ll never stop missing him, never stop grieving that loss.  But after a while I did get past the loss — dealing with it so I could continue to live my life in the face of it.

For me, the grieving process really started three years after my stroke when, after years of intense therapy focused on regaining my speech in order to resume my role as a professor at Stanford University, I simply could not resume that position. This was devastating for me! I relied on a variety of strategies: connecting with family, friends, and meditation which helped me move through the mourning process.

Q: With identity being a social construct, how can survivors use the power of community to fuel their rebuilding process?

A: Community is really key to rebuilding identity. We are social creatures and particularly after suffering a stroke, it is so easy to feel — and become — very isolated. Social science research is very clear that being in a community with others is a significant influence on happiness.  So it is important for survivors to fight isolation — whether that means returning to communities they had pre-stroke — friends, family, work, religious organizations, etc., or new ones built after stroke, like support groups, programs for people with disabilities, new work or volunteer activities, etc.

Like what you’re reading? Visit Stroke Onward’s website for more.

Q: What advice would you give someone who sees the value of all the insights you’ve shared, but doesn’t know where to start in their own emotional rehabilitation?

A: I have to stress again that every person, and every situation, is unique.  So every survivor will find different things most valuable.  But a few observations from our experience and what we have heard from others are: 

• Work hard on your recovery.  Consistency and repetition are important. Remember that there is not a time limit for improvements — I am still improving 10 years after my stroke. And for me, the hard work on rehabilitation also helps my mental/emotional state.
• Small Wins are really important. They add up. The recovery process can seem overwhelming if you think from start to finish.  Focusing on small wins helped me focus on the process of recovery.  
• Advocate for yourself, and hopefully get family and friends to do so for you, to be sure you can get what you need.
• Try to look forward, not back, as much as you can.  But people are human, so it’s also important to give yourself the space to grieve what you have lost. 
• Look for the deeper meaning in what you used to do.  Not the tasks or titles, but why they gave you pleasure or meaning.  Then look for ways to get that same pleasure and meaning in the face of your new reality.  
• Ask for help – not just to do things you can’t do, but to help process the emotional journey.  Like anything in life, really, we can’t do it alone.  Whether you get that help from a partner, friend, child, parent, professional coach, or counselor – don’t try to “gut it out” yourself. 

Q: That’s really instructive advice. Do you remember any feedback you received on your own recovery journey that felt particularly useful? 

A: For three years I was totally focused on getting everything back.  Nobody promised me I would, but they encouraged me to try.  If they had told me I couldn’t, and I needed to think about rebuilding a different life, it wouldn’t have helped.  I’ve heard lots of stories of both extremes — unrealistic optimism, which leads to deep disappointment (and even depression), and pessimism that discourages work that could help and demoralizes the spirit.  What I realize now is that, once I knew I needed to rebuild a new life, there really wasn’t anything out there to help.  That’s why we’ve started Stroke Onward — so that hopefully, in the future, when survivors and families are ready to think about rebuilding new and different lives, there will be more resources available to help.

Q: There’s a critical gap in resources available that speak to the social-emotional aspects of stroke recovery. Identity Theft gives light and voice to these otherwise understated emotional challenges. The work you do at Stroke Onward is no different. Are there any new projects you guys are currently working on?

A: Just as we are celebrating Aphasia Awareness Month, we are excited to launch our Book Guide for people living with Aphasia. It’s a free tool to deepen the learning people might get from Identity Theft. We received the feedback that listening to the book individually is meaningful, and the opportunity to discuss it with fellow survivors can make it even more valuable.

For support group facilitators, we have developed a Facilitator’s Guide and additional materials including short chapter summaries and highlights, questions for reflection, and other supporting materials. These new materials are now available on the Stroke Onward website. These amazing resources can help guide your emotional recovery journey after brain injury. Check them out.