Our Work

Early Impact

Feedback to date has only confirmed that a significant gap exists in the emotional recovery guidance and resources available for stroke survivors, their families and professional caregivers. Central to our mission is finding effective ways to increase awareness of this gap and actively promote the importance of addressing emotional needs and rebuilding identity after stroke.

Through speaking engagements, meetings with healthcare professionals and survivor groups, podcasts, and interviews,  Debra and Steve are able to provide both powerful voice and varied perspective. Together, they have almost a decade of lessons to share from navigating the aftermath of Debra’s severe stroke — through the vulnerable eyes of a survivor and principle caregiver/supporter, as partners and as parents.  As individuals, Debra brings academic expertise in identity, and a growing understanding of how these concepts and tools may apply in a life post trauma. Steve’s leadership experience in a nonprofit focused on social and economic equity has particular relevance for a community of survivors that often lacks access to the support and resources needed for recovery. 

In addition to speaking engagements to build awareness, we are meeting directly with experts on stroke recovery — neurologists and other physicians, therapists of all kinds, educators, policy makers, business and nonprofit leaders and others with the ability to influence the stroke recovery care continuum. We are also engaging with the most important experts — stroke survivors and their families — to learn what is most needed and least available to support their emotional journey back to good lives. This work is not only critical to broaden and deepen our understanding of the issues, it is creating ripples of awareness and building foundations for future collaboration. 

  • "When we treat people after stroke, we are so focused on activities of daily living... we don’t have time or staff to deal with emotional issues... and the patients really are not ready at that early point to accept it."

    A California therapist

  • "I show the book to all my patients now. We want to use it for all our aphasia book clubs."

    A Chicago therapist

  • "A lot of people never get to the realization that they need emotional support, and those that do, get there at different times."

    A California therapist

  • "Patients have no long term case manager once they’re outside the hospital setting. Case managers in hospital deal with insurance and how to get into rehab—not emotional needs."

    A California therapist

  • "There is a great need for emotional support. Many patients are left with significant disability and a quality of life that is never the same…Depression and anxiety are very under diagnosed in the stroke world."

    A Boston neurologist

  • "As a rehab doctor we try and stay up on resources available locally but it’s really my patients who tell me things… there really is no way to disseminate this information on a broad-based scale…Resource guide books exist but they go out of date so quickly."

    A California neurologist

  • "Most people fall thru the cracks. Some barely survive or disappear into the void. Some are resilient and plod along. Some have an overwhelmed spouse taking care of them and family and picking up financial needs …until they burnout."

    A California therapist

  • "Stroke steals your personhood. It’s so unfair. How do you come out not just as a different person but as someone with a new goal and purpose?"

    A Boston neurologist

  • "We build rapport and learn what motivates people, but we are so focused on physical and cognitive limitations initially we can’t focus on the emotional needs …and usually we don’t have anyone we can refer them to."

    A California therapist

  • "I mostly practice medicine in the intensive care unit and a lot of what we do is delivering really bad news to people….Sometimes people aren’t ready to hear information…we see huge variability as different people have different coping levels."

    A California physician

  • "So many patients and families dealing with stroke are definitely showing signs of PTSD…support groups are fragmented…we need more avenues to help."

    A California therapist

  • "Some people struggle a lot emotionally. Not only does that make it hard for them to participate in life, it also makes them get less benefit from their therapy."

    A California therapist

  • "Patients need to understand that it isn’t either/or—it’s both working for the long term to regain more AND accepting they have been changed."

    A California therapist

  • "How do you help people to have grit?"

    A California student

Looking Forward

While Stroke Onward’s mission is clear and our launch successful, additional initiatives to deepen impact will continue to evolve. We intend to carefully assess how and where we position strategic efforts on a critical path that begins with raising public and professional awareness, and ends with survivor self advocacy to improve access to needed emotional resources at the right time in each individual’s recovery. 

Many talented professionals and excellent organizations are engaged with stroke recovery and we are committed to amplify and complement – not duplicate- existing efforts and resources.  There are also many lessons to be learned from organizations in other medical fields that have created models that are driving change in resource efficient ways. We intend to work closely with our growing networks as one means to further prioritize, develop, and test our initial ideas.  These include:

  • Influencing Influencers: Who has the best opportunity to advise survivors and their supporters on the importance of identity and emotional recovery after stroke? When is the right time for survivors to absorb and use that advice? In acute treatment post stroke, focus is squarely on recovering capabilities. Post discharge many survivors disconnect from the medical system, especially those with limited resources.  Where and when might we create the greatest impact by delivering the right material to influencers?
  • Improving access to resources: Survivors, families and professional caregivers tell us that it’s hard to find good resources to support the post stroke emotional journey. Even those that exist are often “hidden” amidst material dominated by physical recovery; some of the best resources we’ve seen are on websites unrelated to stroke — like grieving a loss or coping with cancer. How helpful might it be to offer online access to a range of support resources from a variety of sources carefully curated from the stroke survivor’s perspective?
  • Supporting support groups: Many survivors and caregivers have told us about the power of peer support groups.  We are developing a support group discussion guide for Identity Theft; would further resource development have meaningful impact?   
  • Creating virtual support groups: Not all survivors and supporters can access a local support group.  There are excellent online groups for stroke survivors generally. Is there value for one focused strictly on rebuilding identity and the emotional journey after stroke?
  • Developing curriculum: Might the greatest impact come from highlighting the importance of identity and the emotional journey in the training programs for professionals who will work with survivors and their families? How might we influence curriculum? For medical school and residency programs?  Training for physical, occupational, speech and other therapists? Possibly for continuing education programs?   

In the months ahead we will refine our strategy and begin to broaden our activity. If you have thoughts about the greatest need, people we should speak with or any other ideas about how we can best support the survivor community, please reach out and let us know. 

Identity Theft Book

Identity Theft: Rediscovering Ourselves After Stroke, co-authored by Debra Meyerson and her eldest son, Danny Zuckerman, took five years and a lot of determination to write.  Released in 2019, the book conveys Debra’s triumphs and struggles following the stroke that stole her identity and almost her life.  

Much  more than a memoir, Debra draws on her skills as a social scientist and interviews with dozens of fellow survivors, family, friends, caregivers, physicians, therapists and other professionals to explore the often overlooked emotional journey of stroke recovery.   An inspiring read, the book assures survivors and those that care for and about them that they are not alone. It helps them cope with the forced changes to identity caused by stroke and other illnesses or trauma that rob people of important capabilities.  

The book and the lessons learned while writing it laid the foundation for Stroke Onward.  All author proceeds from the sale of Identity Theft will help fund Stroke Onward’s future work.  For more about the book visit: identitytheftbook.org.

What People Are Saying

  • "What sets this book apart ... is its focus on stroke survivors' emotional journeys ... An encouraging story of personal growth after a life-altering medical event."

    KIRKUS REVIEWS - Full Review

  • "Identity Theft is the most powerful book I’ve read on the psychological experience of having and recovering from a stroke. Meyerson is not only a gifted social scientist; she’s also a survivor. This is a moving memoir—and a testament to the strength of the human spirit."

    ADAM GRANT, NEW YORK TIMES BESTSELLING AUTHOR OF OPTION B, ORIGINALS, AND GIVE AND TAKE

  • "… (A) powerful, intelligent, and emotionally-rich exploration of the experience of acquiring and then living with aphasia… Meyerson’s background in sociology and in identity research give her a distinctive voice..."

    BARBARA B. SHADDEN, PhD, CCC-SLP, BOARD CERTIFIED ANCDS, PROFESSOR EMERITUS, PROGRAM IN COMMUNICATION DISORDERS, UNIVERSITY OF ARKANSAS

  • "Identity Theft is a must read for stroke survivors, their families, and stroke professionals. Using her story and those of others, Debra writes with humor and pragmatism about embracing and thriving in new identities after stroke."

    DR. CHITRA VENKATASUBRAMANIAN, MBBS, MD, MSC, FNCS, PROFESSOR, STROKE AND NEUROCRITICAL CARE, STANFORD UNIVERSITY

  • "Identity Theft will provoke thoughts, ideas, and paths to growth for anyone wrestling with identity in the face of life changes. Even while struggling with the aftermath of her stroke, Debra found a way to create this gift to others."

    LAWRENCE BACOW, PRESIDENT, HARVARD UNIVERSITY

  • "Identity Theft offers a deeply moving, candid, eye-opening, and compassionate picture of life after stroke. It displays the power of resilience, determination, acceptance, and love—and is sure to inspire helpful reflection, no matter one’s age or health."

    KATHERINE J. KLEIN, EDWARD H. BOWMAN PROFESSOR OF MANAGEMENT AND VICE DEAN, WHARTON SOCIAL IMPACT INITIATIVE, THE WHARTON SCHOOL, UNIVERSITY OF PENNSYLVANIA

  • "With Identity Theft, Debra Meyerson has written what will certainly become a go-to resource for stroke survivors and their families, navigating that critical question—‘Who do I want to be now?’"

    JULIA FOX GARRISON, STROKE SURVIVOR AND MOTIVATIONAL SPEAKER, BESTSELLING AUTHOR OF DON’T LEAVE ME THIS WAY

  • "It is a rare book that can begin with medical trauma and loss of self-identity and turn into a deeply moving, surprisingly uplifting, and profoundly wise meditation on what it means to be human."

    ROB REICH, PROFESSOR OF POLITICAL SCIENCE, STANFORD UNIVERSITY; AUTHOR OF JUST GIVING

  • "After watching Debra Meyerson’s extraordinary academic career cut short by her debilitating stroke, it is so inspiring to see her create such a powerful book for anyone trying to build a life of meaning in the face of adversity."

    CLAUDE STEELE, PROFESSOR EMERITUS OF PSYCHOLOGY, STANFORD UNIVERSITY, AND FORMER DEAN, STANFORD SCHOOL OF EDUCATION; AUTHOR OF WHISTLING VIVALDI

  • "Identity Theft is a scholarly yet easy-to-read exposition that addresses so many issues faced by stroke survivors, especially those with aphasia. It is a story of determination and hope that should be of interest to everyone."

    LEORA R. CHERNEY, PHD, SCIENTIFIC CHAIR, THINK + SPEAK LAB, SHIRLEY RYAN ABILITYLAB; PROFESSOR, PHYSICAL MEDICINE & REHABILITATION, NORTHWESTERN UNIVERSITY