Stroke Onward: Rebuilding identity

Stroke survivor Debra Meyerson is a former Stanford University professor who taught and wrote about gender, diversity and identity. She is also the author (with her son, Danny) of Identity Theft: Rediscovering Ourselves after Stroke. Debra and Steve Zuckerman, her husband of 32 years and “carepartner” after stroke, founded the nonprofit Stroke Onward to help survivors, families and caregivers navigate the emotional journey to rebuild their identities and rewarding lives. In this periodic column, they share their experiences and insights, and those of others contributing to this important aspect of recovery. Here, Debra discusses a bit about her journey.

Let me start with the obvious -- having a stroke sucks! In one instant I went from a healthy, fit, athletic 53-year-old in the prime of my career, to a patient in the ICU fighting for my life. I was lucky; I lived. For two months I moved between acute care and rehab hospitals as they tried to stabilize my medical condition and get me started on therapy and the road to physical recovery. I finally got home and started what I thought would be a few months, or maybe a year, of incredibly hard work to get me back to life as I knew it, including as a professor at the Stanford School of Education. 

Debra ZuckermanHow wrong I was. As it turned out, I spent three years doing therapy almost full time. Speech, physical and occupational therapy. As much as I could get. Fighting insurance to pay for more. Working on my own in between. Sometimes it was painful. It was certainly hard work. And it was brutally frustrating. Especially because I had (and have) significant aphasia, which makes communicating an incredibly maddening challenge. (Aphasia is most common in adults who’ve had a stroke.) 

But the hardest part of my recovery was yet to begin. Three years after my stroke, my aphasia made it impossible to fulfill the requirements of my job as a professor. I was forced to give up the tenured position I had worked my entire career to achieve. This realization felt like a second trauma. No matter how hard I worked, apparently, I was not going to get my old life back. I think I was slower than most to realize that. Or, maybe more accurately, I was slower to accept it. And thus began the hardest part of my recovery, what we now call the emotional part of the journey. For the past seven years I’ve struggled to accept all that I lost. I’ve also struggled to rebuild my identity – my sense of self – and a life of meaning and purpose.

After the punch in the gut of losing my job, I was angry, sad, even depressed at times. I was also in denial. “I’ll show them,” I thought. I CAN still be the old me. Maybe I can’t be a professor, but I can still write a book! So I started. Steve helped. But he had a job, so we found someone who could help more. Every day I forced myself to face the frustration of my communication disability and all the help I now needed. I hated that – I couldn’t stand being so dependent!

But the writing process (which took five years) ultimately helped me start to build a new life after stroke. It helped me see the importance of the emotional journey. And it was such hard work. Every day, writing about my new reality challenged my notion of who I am – or was. It made me think about identity, something I had studied, taught and written about as an academic and in my earlier book, Tempered Radicals.

Making progress toward understanding myself and my life helped me push through the frustration. But even with that, I almost quit writing several times. What kept me going was the belief the book might help others. Early in the process, we interviewed 25 other survivors, and about 25 family care partners and professional caregivers. We learned almost everyone struggled with this emotional journey. Yet almost no one had found, let alone been offered, resources to help with it. I was finding a way to bring purpose back into my life, and that kept me going. It also led to another key message of the book: People yearn for meaning and to have purpose in their lives. 

Steve and I have stumbled so much these past 10 years. And we’ve learned so much: How hard, but important, it is to be vulnerable. How denial is both a powerful asset and a dangerous barrier. How much the emotional process of stroke recovery mirrors the process of grieving the loss of a loved one – maybe because we have, in fact, lost our old selves. But we also learned that so much of “who we were” still remains, especially our values, and that it is possible to find new ways to live with those values in our changed circumstances. We’re not wild about the phrase “silver linings,” but we learned there actually are good things after stroke that we need to acknowledge, even celebrate. There are opportunities for amazing personal growth. 

To be clear, we have not figured this out. My journey, our journey, continues to evolve. And it will never end. I will never stop mourning my loss of capabilities, and the career and activities I lost with them -- just like I will never stop mourning the loss of my dad 25 years ago. But I hope I can push through that grief and build a truly rewarding life in spite of it.

Steve and I started Stroke Onward because we believe more attention must be placed on the emotional journey in stroke recovery. We want to help develop more resources to support all stroke survivors in their journeys. And we recognize the journey is just as important for carepartners as it is for survivors. In that spirit, next month in this column Steve will share a bit about his journey in the never-requested role of carepartner.

We thank the American Stroke Association for enabling this column to help us do this important work. Please follow us on social media @strokeonward and share your thoughts with our community.