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."
"I show the book to all my patients now. We want to use it for all our aphasia book clubs."
"A lot of people never get to the realization that they need emotional support, and those that do, get there at different times."
"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."
"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."
"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."
"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."
"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?"
"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."
"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."
"So many patients and families dealing with stroke are definitely showing signs of PTSD…support groups are fragmented…we need more avenues to help."
"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."
"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."
"How do you help people to have grit?"
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:
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: 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 sets this book apart ... is its focus on stroke survivors' emotional journeys ... An encouraging story of personal growth after a life-altering medical event."
"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."
"… (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..."
"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."
"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."
"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."
"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?’"
"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."
"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."
"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."