Rebuilding Identity After Stroke

Stroke recovery is entering a new era.

Stroke can change more than what you can do. It can change how you see yourself, how other people see you, the roles you hold, where you belong, and what you imagine for your future.

What does it mean to rebuild a life after stroke?

Rebuilding Identity After Stroke brings together research, lived experience, and interdisciplinary expertise to explore one of the hardest parts of stroke recovery to name: rebuilding a life that still feels like your own.

 

The way we understand stroke recovery is expanding.

For a long time, stroke recovery has been described largely through what someone can regain or relearn: walking, speaking, working, driving, remembering, living independently.

Those things matter deeply. But they are not the whole story.

The stroke field is increasingly paying attention to mental health, relationships, meaningful roles, carepartner well-being, participation, and how people understand themselves and their futures. The 2026 AHA/ASA Guideline for Adult Stroke Rehabilitation and Recovery is an important signal of that broader shift.

Recovery is about more than what you can do.
It’s about the life you want to live.

Sometimes identity doesn’t sound like “identity.”

It sounds like:

I don’t feel like myself anymore.

Or:

I can’t work anymore.
People treat me differently.
My role in my family has changed.
I hate having to depend on other people.
I don’t know where I belong.
I don’t know what my future looks like.

These are everyday questions, but they can reach into something much bigger: how we understand ourselves, how we are known by other people, and what feels possible in our lives.

The paper itself begins from this same premise: people may experience major changes in self, roles, relationships, belonging, and future without ever describing what is happening as an “identity problem.”

Where rebuilding a life can show up

Work

Who am I if I can’t do the work I used to do?

Relationships

Why do the people closest to me treat me differently now?

Communication

How do I show people who I am when communicating is harder?

Independence

What does needing help change—and what doesn’t it change?

Family

What happens when familiar roles and responsibilities shift?

Belonging

Where do I fit now?

The future

What can I still want, plan for, or imagine?

No single experience belongs in just one box. Work can involve independence, relationships, purpose, money, belonging, confidence, and the future all at once. The aim of this work is not to categorize people’s experiences, but to help us see more of what those experiences contain.

Built from research, lived experience, and many disciplines

This work remains grounded in Identity Theft: Rediscovering Ourselves After Stroke by Stroke Onward cofounders Debra Meyerson and Steve Zuckerman and in the work that has grown from it.

For Rebuilding Identity After Stroke, Stroke Onward brought that foundation into conversation with research across stroke and acquired brain injury, clinical and community expertise, and lived experience. An interdisciplinary advisory group helped question assumptions, identify what was missing or overstated, contribute additional perspectives and evidence, and test whether the emerging ideas reflected the complexity of people’s actual lives.

This is a starting point—not a claim that the questions of identity after stroke have been settled.

Meet the Advisory Group

A range of perspectives shaped this work—from psychology, neuropsychology and neurology to disability justice, education, lived experience, community leadership, and systems change.

Debra Meyerson was, until her stroke in 2010, a tenured professor of organizational behavior at Stanford University’s School of Education.  Debra’s most significant contribution from that period was Tempered Radicals:  How Everyday Leaders Inspire Change at Work (HBS Press, 2001). More recently she authored  Identity Theft: Rediscovering Ourselves After Stroke (Andrews McMeel Publishing, 2019) and is co-founder and co-chair, with her husband Steve Zuckerman, of Stroke Onward, a nonprofit working to ensure stroke survivors and their supporters have the resources needed to rebuild identities and rewarding lives. 

Steve Zuckerman is, along with Debra, Co-Founder and Co-Chair of Stroke Onward; he has been Debra’s carepartner since her stroke in 2010.  He has held leadership roles at Self-Help, a nationally recognized economic justice nonprofit, since 2006 and still serves part time as a Senior Advisor.  Before that he was a Managing Director at a private equity firm.   

Dr. Sara Pillay, PhD, ABPP, has spent her career at the intersection of brain science and human connection.

As a board-certified neuropsychologist and Associate Professor of Neurology at the Medical College of Wisconsin (MCW), she works directly with stroke survivors and their families to understand and treat the cognitive and communication changes that come with aphasia. She co-directs MCW’s Intensive Program for Aphasia Therapy and leads a communication support group that helps people with aphasia and their families connect with one another beyond the clinic.

Alongside this clinical work, Dr. Pillay is an NIH-funded researcher using brain imaging to study how lesion location shapes language breakdown and reorganization after stroke, work aimed at improving recovery and treatment for people with aphasia.

Dr. Jennifer Connor-Smith is a psychologist and educator whose work focuses on helping people navigate life’s challenges. She is passionate about translating psychological science into practical tools that help people understand their experiences, draw on their strengths, and find new ways forward.

As a faculty member, Jennifer studied individual differences in coping and responses to stress and tested treatments for depression and anxiety. As a clinician, she supported people facing stress, trauma, hopelessness, and difficulties managing everyday life tasks.

Today, Jennifer brings her research and clinical experience together to design programs that help people understand their own minds and build the skills they need to thrive. Recent work has included creating OptionB.org resources for people grieving life-altering losses.

Jennifer brings to Stroke Onward a deep understanding of ways to help stroke survivors and their loved ones adapt to profound change and imagine new possibilities. 

Dr. Darling-Hammond has worked in human development for 30 years, with a focus on creating conditions for thriving (not just surviving or resilience).

A doctor of developmental and social psychology in education, and with experience as a coach, mentor, teacher, researcher, and administrator, Dr. Kia’s insight into people’s dynamic daily lives has come via many paths.

Her Bridge to Thriving framework has enabled transformation for individuals and organizations across sectors, ages, and interests.

David J. Lin, MD is a critical care neurologist and neurorehabilitation specialist at Massachusetts General Hospital (MGH) and an Associate Professor of Neurology at Harvard Medical School.

In his clinical practice, Dr. Lin cares for patients with acute neurologic injuries including stroke, brain hemorrhage, and traumatic brain and spinal cord injury in the MGH Neurosciences Critical Care Unit. He is the Director of the MGH Neurorecovery Clinic, a program which provides longitudinal, neurorehabilitation-focused care for survivors of stroke and other acute nervous system injuries.

In his research program, funded by sources that include the National Institutes of Health and the Department of Veterans Affairs, Dr. Lin directs the MGH Laboratory for Translational Recovery, an interdisciplinary group of clinicians, scientists, and engineers working together to improve neurorehabilitation for patients recovering from stroke.

Liz Wolfson is an entrepreneurial and visionary leader with 20+ years of experience creating strategic direction, driving operational growth, and cultivating human capital within a variety of nonprofit and corporate settings. Liz deeply believes in the collective power of individuals to find solutions for systemic problems. She thrives in environments committed to and walking the talk of equity, well-being, radical candor, and joy.

Motivated by changemakers Debra Meyerson and Steve Zuckerman, Liz leads the team of Stroke Onward as its founding CEO, determined to raise the standards of post traumatic whole human care for all stroke survivors and their carepartners and communities.

WHO THIS WORK IS FOR

If you’re a survivor or carepartner

If stroke changed more than abilities—if it changed relationships, roles, independence, belonging, or your picture of the future—this work explores those parts of life after stroke too.

If you’re a healthcare or rehabilitation professional

What does the goal someone is working toward make possible in their actual life? This work offers a way to ask broader questions about the person behind the rehabilitation goals.

If you work in research, healthcare, community, or systems change

Rebuilding Identity offers shared language for questions that cross disciplines—and a starting point for further learning, research, and practical application.

This is the beginning.

Rebuilding Identity After Stroke does not offer a single pathway or tell people who they should become after stroke.

It offers a starting point: language for experiences that can otherwise be difficult to name, a way to ask better questions, and a foundation for what we can learn and build next.


What does it mean to rebuild a life after stroke?

We hope you’ll be part of the conversation.

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Join Stroke Onward founders Debra and Steve and all of our colleagues, collaborators and supporters who are helping to create a system that gives all survivors access to a better recovery after stroke, both physical and emotional.

By joining our community, you will get access to helpful resources, and receive our periodic newsletter that includes updates about our expanding work to support survivors and families and improve the stroke system of care.