Each year, more than 800,000 strokes occur in the U.S., leaving millions to navigate recovery. While physical survival is the immediate priority, and rehabilitating lost capabilities is essential, the emotional journey of rebuilding one’s identity is often the most challenging. Yet there is virtually no support for that process, and that’s where Stroke Onward steps in.
2024 was a year of deepening impact, affirmation, and transition. Seeds that we and our small team had been sowing since 2019 continued to sprout. Importantly, feedback has consistently reinforced that we have, in fact, identified a critical gap in the stroke system of care. Many people and organizations are joining us to create better support for the emotional journey in recovery, as we actively support survivors and their families, and drive toward real systems change.
Response to our programs in 2024 was fantastic – and reinforced what we concluded after our 4,500 mile Stroke Across America journey in 2022 – we need to do more. And for that, we needed the right kind of experienced, entrepreneurial, full-time leadership. It took us all of 2023 to find Liz Wolfson, and we are thrilled that she joined Stroke Onward as our first CEO in early 2024. Liz is a great leader who has, with eager support from us and our board, set a bigger, bolder, more strategic path for growing our organization and our impact.
As we reflect on our life journeys – together since we met in 1985 – our identities have constantly evolved. We became a married couple, and then parents. We changed jobs and careers. And the most wonderful change in 2024 – we became grandparents! Since Deb’s stroke in 2010 we have also navigated new aspects of our identities that we’d rather not have– stroke survivor and carepartner. That change led to our writing Identity Theft, published in 2019, and we’re pleased to share that a second edition will be released in Fall 2025. It includes a new preface and two additional chapters that reflect our continuing journey to improve stroke recovery for millions of people and their families.
Thank you for your interest and support. Together, we will build a lasting legacy of hope, healing, and transformation.
Warmly,
Deb & Steve
Co-Founders and Co-Chairs
In her 1999 book All About Love, bell hooks wrote, “Rarely, if ever, are any of us healed in isolation. Healing is an act of communion.”
Reflecting on my first year leading Stroke Onward, I have witnessed the strength of this community— those with lived experience and those working daily to support recovery. This community is united by a common drive: to ensure that stroke recovery is holistic, supporting not only physical recovery but the rebuilding of identity in support of living meaningful well-lived lives.
As well, the resilience, strength, and determination of this community to advocate for a just healthcare system is inspiring. At Stroke Onward, we are committed to recovery—not just individually, but collectively.
I am deeply grateful to our Co-Founders who remain at the center of all that we do, our Board of Directors, the professional staff, and a growing list of over 200 collaborators. This is my year one in leading the organization, and navigating this challenge with such dedicated individuals is a gift.
In 2024, our focus was on fostering an inclusive, engaged network of stakeholders—survivors, carepartners, healthcare professionals, researchers, and innovators. Stroke Onward has become a convener and a safe space for everyone involved in this shared mission.
We made significant strides, expanding the work of the organization in order to scale programs and our audience. This growth includes launching the Regional Collective Impact Gatherings, which featured the powerful debut performance of The Stroke Monologues in Denver, CO in November. Additionally, we launched the development of the Stroke Onward Community Circle (SOCC), an online platform designed to connect all stakeholders in our ecosystem and amplify partners. We have now shared the platform infrastructure with individuals, allied organizations and emerging tech and pharma companies, working with superusers and content providers, and there is great excitement for its public launch in 2025.
To our generous supporters—your unwavering commitment strengthens our bonds and brings greater joy to our work and those we serve.
As we continue to grow in numbers and influence, I am excited about the impact we can make together in 2025 and beyond.
Sincerely,
Liz Wolfson
CEO, Stroke Onward
Raising awareness continues to be at the forefront of Stroke Onward’s mission. Highlights from 2024 include:
Debra and Steve were honored with an invitation to deliver a keynote address at the 2024 American Congress of Rehabilitation Medicine (ACRM) conference, the world’s largest interdisciplinary rehabilitation research event. Their plenary session, Journey of Rebuilding Identity Following Stroke, showcased Debra’s use of an innovative AI voice cloning platform, ElevenLabs. As they shared in their remarks, “Disabilities may limit choices, but they don’t have to dictate who we are.” On the heels of the 2024 ACRM conference, Stroke Onward and ElevenLabs began a partnership that will allow us to offer free licenses to all people with aphasia who sign up to participate on the Stroke Onward Community Circle (SOCC), an online platform described more fully below.
This year we celebrated our 4th year collaborating with the American Stroke Association to create and share an online column focused on rebuilding identity after stroke. In addition to sharing insights from Debra and Steve, in 2024 our columns highlighted Rory Polera, a young survivor who shared how wearable technologies and smartphone applications helped him rebuild his strength, confidence and identity. We also welcomed a guest column from Lucia Valdez, LCSW and founder of Colorado Brain Injury Therapy, in which she explored the complexities and challenges of loneliness after stroke. We are committed to utilizing these columns to inform and learn with our community.
Stroke Across America, Debra and Steve’s 2022 cross-country bike ride, continues to be a source for content creation and impact. Stroke Onward was thrilled to begin work in 2024 with WCNY, Central New York’s public communications organization, to develop a documentary film that would, “capture the will, spirit, and small wins” achieved during Stroke Across America. WCNY’s vision is to, “inspire the curious of all ages through educational programs and transformative experiences that open minds and spark change.” Stay tuned.
At Stroke Onward, we believe in the power and importance of amplifying diverse voices so that every survivor knows they are not alone. Here are a few of the individuals and partner organizations that inspired us in 2024:
Stroke survivors often face the daunting task of rebuilding a sense of community while facing acute and lifelong impacts. After experiencing a stroke in rural Colorado at age 34, Flannery O’Neil initially relied on her therapeutic team for support. As she began to recover and sought peer support, she realized that the closest survivor support group was more than an hour’s drive away– so she co-founded a new one. In 2020, Flannery joined the Stroke Onward team and expanded her community and contributions, sharing her many talents and lived experience to spark the organization’s vision and growth. She has shared her personal story countless times to encourage others, as she did in this 2024 podcast and partnership with Beyond Stillness: Stories After Stroke.
Reggie Hubbard, an internationally recognized yoga and meditation teacher and the founder of Active Peace Yoga, became an invaluable thought partner to Stroke Onward in 2024. Reggie’s practice served as a sanctuary while navigating the stresses of being a man of color in the world. Following his own stroke in April 2023, Reggie transformed his work and now shares his inspiring stroke recovery journey, offering powerful lessons on vulnerability, compassion, and nuanced thinking.
In 2024, Stroke Onward was honored to partner with Maddi Niebanck, a rehabilitation advocate and founder of Maddi Stroke of Luck. Just ten days after graduating from Georgetown University, Maddi experienced a stroke that drastically altered her life’s trajectory. Despite facing grim odds and emergency brain surgery, Maddi has not only recovered but has thrived, becoming an accomplished author, passionate disability advocate, and content creator. Her belief that “obstacles are opportunities” resonates deeply with Stroke Onward’s mission. In 2025, Maddi will be performing at The Stroke Monologues, sharing her inspiring story and furthering Stroke Onward’s commitment to empowering stroke survivors. Her organization, Maddi Stroke of Luck, will also collaborate with Stroke Onward to bring support and rehabilitation resources to stroke survivors. This developing relationship is a testament to our mutual commitment to ensuring all survivors and care partners have the resources needed to rebuild identities and rewarding lives.
Identity Theft: Rediscovering Ourselves After Stroke conceived by Debra Meyerson and influenced by her expertise in identity scholarship, remains a foundational resource for the work of Stroke Onward. More than a memoir, it conveys the varied stories and experiences of people and families post stroke, all in the context of the critical need to rebuild identity on a path to find new purpose, meaning, and joy.
Stroke Onward has created audience-specific book group discussion guides that we have developed in collaboration with academic and community partners. Our goal is to make it as easy as possible for people to create dialogue that can help deepen and personalize the reading of the book. Through 2024, these guides have been downloaded more than 570 times by facilitators supporting survivor, carepartner, and healthcare professional groups, as well as other individuals, impacting thousands of readers.
Stroke Onward is delighted that Debra and her husband Steve, our co-founders, authored a second edition of the book in 2024, with an expected release in fall 2025. We plan to update the book guides to reflect this updated version post release.
Incorporating Identity Theft and related activities into curriculum has been a cornerstone of our work to develop a pipeline of future stroke care professionals sensitized to our mission and the communities we serve. Six faculty members from across the country completed an IRB-approved research study that featured Identity Theft, “The Effect of In-Depth Exposure to the Lived Experience of Aphasia on Student Learning.” Their manuscript has now been accepted for publication in the journal, Teaching and Learning in Communication Sciences & Disorders (TLCSD).
We congratulate and thank the following faculty innovators for inspiring us and their peers:
We were honored to have Craig Slater, PhD, MPH, OT and the Director of Interprofessional Education and Practice at Boston University’s Sargent College of Health and Rehabilitation Sciences, present co-created materials at the 2024 Nexus Summit: Navigating Complexity to Advance Outcomes. Together we’ve developed two interprofessional simulations to introduce students to family conference scenarios that highlight person- and family-centered communication about an individual’s condition, values, treatment preferences, and future plans in a way that normalizes the need for survivors to rebuild identities and a rewarding life post-stroke. After a successful 2024 pilot, upcoming plans include incorporating additional disciplines and making these co-developed materials freely available to other faculty.
In support of mental health skill building in professionals who serve those impacted by stroke, Debra and Steve have been honored to serve on the Aphasia Community Advisory Board associated with the innovative Acceptance and Commitment (ACT) for Aphasia project led by William (Will) S. Evans, PhD, CCC-SLP, School of Health and Rehabilitation Sciences, University of Pittsburgh. This important project seeks to expand the availability of mental health support for people with aphasia by training Speech-Language Pathologists to deliver interventions for both evidence-based compensatory language and counseling treatment components in partnership with supervising psychologists.
In 2024, Stroke Onward expanded its impact by partnering with Stroke Onward board member Mukul Pandya and Swarna Kuruganti, an accomplished business-oriented technologist, to author a series of articles focused on emerging technologies and innovative approaches in stroke rehabilitation and recovery. With the prevalence of stroke rising globally, these articles address the urgent need for effective and forward-looking solutions. They completed three collaborative articles in 2024, “Rewiring the Brain: New Frontiers in Aphasia Treatment”, “ ‘I am What I Choose to Become’: How Ingrid Clarfield Reinvented Her Musical Life After Stroke” and “Technology as Enabler: Constant Therapy”. Additional articles are planned for 2025.
Stroke Onward recognizes the critical importance of industry collaboration in achieving its mission. As such, we are proud to announce that Bayer AG, a leader in stroke prevention and a national sponsor of the American Stroke Association’s “Together to End Stroke” initiative, has become a national sponsor of the Stroke Onward Community Circle (SOCC) and our Regional Collective Impact Gatherings. This 2024 partnership laid the foundation for impact through upcoming events in major cities where we will work together to spread awareness and empower stroke survivors and their care partners with the resources they need to rebuild their lives.
Since launching Stroke Onward we have been very clear about our vision – helping to create a stroke system of care that supports every survivor and their families in the emotional journey in recovery. We believe our programs to date have been working successfully toward that vision. But we have built them somewhat opportunistically, and we have seen far more opportunities than we have the resources to pursue. So a key priority for 2024, under Liz Wolfson’s leadership, was to sharpen our strategic focus around programs that would:
Over and over we have heard how isolating the stroke experience can be for too many survivors and their supporters. Researchers, clinicians and people with lived experience tell us about the devastating impacts of isolation on recovery. Through many of our programs, and those of our allies, we have seen the healing power of engaging in community.
We also know that long-term solutions require the collective expertise, resources, and influence of strong, diverse coalitions. And we believe that any successful movement for systems change must be centered on those directly impacted by that system.
Late in 2024, Stroke Onward leadership and board agreed to focus our efforts on “Community as Strategy” and the team developed and began implementing two clear programmatic priorities: Regional Collective Impact Gatherings and the Stroke Onward Community Circle (SOCC).
This is our in-person strategy. Our goal is to build our community through a series of meetings –in several distinct formats – one city or region at a time. We talk of “collective impact” because complex social problems require solutions developed in collaboration by people with diverse viewpoints and expertise — including those with lived experience. Our goal is to hold events in four or more regions each year, enabling us to build coalitions throughout the US over time. Each regional gathering may include any or all of the following events, with other formats under development:
In November, the Stroke Onward team travelled to Denver, CO and launched this program with two successful events. The inaugural Stroke Monologues showcased stroke survivors Thomas (TC) Dantzler, Jr. and Maggie Whittum, Denver neurologist Dr. Michelle Leppert, Lucia Valdez LCSW, a counselor with expertise in stroke and brain injury, and Stroke Onward co-founders Debra Meyerson and Steve Zuckerman. The diversity of the performers and their content was noted by many attendees. An audience of almost 100 was deeply moved by the raw honesty and vulnerability of the Monologues. As one stroke survivor in attendance said: “I feel like I just came out of the stroke closet!”
Stroke Onward also hosted its first Stroke Care Onward gathering in Denver. Sitting in a large circle, doctors, counselors, hospital administrators, stroke survivors and carepartners shared their experiences and perspectives on stroke recovery, including strategies for bringing more emotional support into the stroke care system. Our network grew and seeds were planted for future collaborations.
Personal gatherings are powerful, but they are difficult to scale. In today’s increasingly digital world, online communities are another critical avenue for connection and collaboration – one that can reach far more people and locations. During 2024 Stroke Onward began developing the Stroke Onward Community Circle (SOCC), with its launch expected in mid-late 2025.
SOCC will bring together survivors, carepartners, healthcare professionals, allied organizations, and others committed to building more emotional support into the stroke recovery process. It will be a place for survivors and families to find community and resources that can help them live well after stroke. It will be a platform for those who provide care and support for survivors to connect, learn, and collaborate. And it will be a strategy through which Stroke Onward can build a broad and diverse community that is critical to power future systems change initiatives.
Stroke Onward’s financial position remains strong as of the close of 2024, bolstered by careful financial management and the continued generosity of donors. We utilized a small portion of the reserves built in our early years to continue our investment for growth. The information below provides an overview of our financial position for 2024:
* Capital Campaign represents contributions from individual donors who made three-year commitments of $1,000 or more per year beginning in either 2022 or 2023 to support organizational growth.
Stroke Onward is committed to providing a website and resources that are accessible to the widest possible audience regardless of technology or ability. We are actively working to increase the accessibility and usability of our website and this report. This report works well with screen readers but if you have any issues accessing it please contact us at connect@strokeonward.org and we will do what we can to improve your experience.
Note: We incorporated the use of artificial intelligence tools to create this report, and Change Agent AI and Perplexity.ai were particularly helpful. We continue to explore and share ways to use assistive AI for good in our work.
Stroke Onward is a 501(c)(3) charitable organization, tax ID 86-2595994.
Debra Meyerson is an author, advocate, and a professor at Stanford University Graduate School of Education. Following her severe stroke in 2010, Debra wrote Identity Theft: Rediscovering Ourselves after Stroke (Andrews McMeel Publishing, 2019). Writing Identity Theft began as a critical part of her personal journey to rebuild her own life outside mainstream academia. It became the foundation for maintaining meaning and purpose in her life despite her ongoing disabilities – helping other stroke survivors and those closest to them rebuild their identities after a trauma like stroke, and navigate the critical and often overlooked emotional journey in recovery. With her husband, Steve Zuckerman, she co-founded Stroke Onward to expand and accelerate that work. In addition to her role on the board, Debra’s significant volunteer commitment to Stroke Onward focuses on speaking engagements, deepening the content built into their work, and supporting related research projects.
Prior to her stroke in 2010, Debra’s academic work focused on feminism, diversity, identity, and organizational change. Debra’s most significant contribution from that period was Tempered Radicals: How Everyday Leaders Inspire Change at Work (HBS Press, 2001). More on her selected publications here. Debra currently serves on the board of the Pacific Stroke Association (PSA), the BU Sargent School Constituent Advisory Board, and the Stakeholder Advisory Board for Acceptance Commitment Therapy (ACT) for Aphasia research project (University of Pittsburgh). Debra received her B.S. and M.S. from M.I.T. and a Ph.D. in Organizational Behavior from Stanford University. Her full CV can be accessed here.
Mukul is an Associate Fellow at Oxford University’s Saïd Business School and a consulting editor of Oxford Business Review. Mukul experienced a stroke in 2021 and was a guest author on our column with the American Stroke Association on his experience as a stroke survivor.
He is the founding former editor-in-chief and executive director of Knowledge@Wharton (K@W), the web-based journal of research and business analysis published by the Wharton School of the University of Pennsylvania. He edited and managed K@W for more than 22 years until his retirement in 2020. In 2020-21. He was a Senior Fellow at the research centres Wharton AI for Business and Wharton Customer Analytics.
Mukul has won four awards for investigative journalism and has more than 40 years of experience as a writer and editor. His articles have appeared in The Wall Street Journal, The New York Times, The Economist, Time magazine, The Philadelphia Inquirer and other publications.
He co-authored Lasting Leadership, Knowledge@Wharton on building corporate value and has written, co-authored or edited three other books. In 2020 he edited an award-winning book, Transformation in Times of Crisis, by Nitin Rakesh and Jerry Wind.
Mukul has a master’s degree in economics from the University of Bombay.
Flannery O’Neil, MPH received her Bachelor of Arts from American University and a Master of Public Health from A.T. Still University. She has worked in healthcare and public health for more than 15 years in both the non-profit and government sectors. Her areas of expertise include communications, data, public health program development and management, and organizational leadership. Most recently, she worked in stroke and cardiac quality improvement for the American Heart and Stroke Association and served in leadership roles for a local public health agency.
Since experiencing an ischemic stroke in 2017, she has worked to advocate both personally and professionally for the needs of people experiencing stroke including founding and leading two stroke support groups.
She lives in Louisville, Kentucky with her husband, Andrew and their dog.
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.
Liz has spent much of her career working for as well as coaching CEO’s and philanthropists in manifesting their corporate and social impact projects locally, nationally and internationally.
Nonprofit organizations benefiting from Liz’s work include Farm Sanctuary, The American Montessori Society, The Rose Institute (for homeless youth), and the Dobkin Family Foundation. Corporate work includes creating the first global internal communications division for Comverse, a world leader in voice activated systems, and raising seed-funding for TaskMail, the first Jordanian/Israeli tech start-up company.
Always up for a challenge, at age 40, with a newborn in her arms, she thought it the perfect time to start up her dream project that would model for her children what it would mean to vision, create, struggle, and succeed. Feeling that educational opportunities for those identifying as girls in America were insufficient to match the reality of growing up in today’s world, Liz became the Chief Visionary Officer of the Girls Athletic Leadership Schools Inc., a game-changing educational model focused on positive gender identity, relational learning and integrated movement as pedagogy. Under Liz’s leadership, GALS Inc. opened 5 schools in three states in ten years and inspired 2 international schools.
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.
Reyne Martinez has over a decade of experience in the non-profit world. Before joining Stroke Onward, Reyne was a Corporate Engagement Coordinator with PBS North Carolina and directed outreach branches within the nationwide organization The Dream Center. She holds a B.A. in Business Administration and a Technical Writing, UX Design, and HR Administration certificate. Reyne has a familiar and personal connection to stroke and deeply believes in the importance of mental health. She currently lives in North Carolina and continues to find ways to advocate for accessibility to mental health services.
Patrick Brannelly is the founding CEO of The 10,000 Brains Project, a philanthropic initiative that supports the use of AI in the development of better treatments and diagnostics for neurodegenerative disorders. Prior to this, he was a member of the Health & Life Sciences team at Gates Ventures, where he served as the Director of Partnerships & Business Development for the nonprofit Alzheimer’s Disease Data Initiative. Earlier in his career, he was a Managing Director at the Rainwater Charitable Foundation, where he led a consortium that sought to accelerate the development of new treatments for neurodegenerative disorders. Pat has also worked in early-stage brain health technology ventures and as a management consultant in the US and Europe. He is a former Assistant Professor of entrepreneurship and strategy at California State University, Fresno. A frequent member of boards and committees within the neuroscience community, he currently serves as a Steering Committee member of the OECD’s Neuroscience-inspired Policy Initiative. Pat holds a BA in Psychology from Harvard College, an MBA with Distinction from Harvard Business School, and an MSc with Distinction in Applied Neuroscience from King’s College London.
Steve Zuckerman is an experienced executive who has held leadership positions in both non-profit and for-profit organizations. He is Debra Meyerson’s husband since 1988, carepartner since her stroke in 2010, and an unnamed co-author of Identity Theft: Rediscovering Ourselves after Stroke (Andrews McMeel Publishing, 2019). In 2019 he scaled back other leadership roles to co-found Stroke Onward with his wife Debra. In addition to his role on the board, Steve’s significant volunteer commitment to Stroke Onward focuses on organizational strategy, fundraising, and governance.
In 2006, Steve launched a California presence for Self-Help, a nationally recognized economic justice nonprofit based in Durham, NC. In 2008, he co-founded Self-Help Federal Credit Union, where he continues to serve part-time as President and Senior Advisor to Self-Help’s west coast operations. His first career involved 14 years with >McCown De Leeuw and Co., a private equity firm, where he was a Managing Director. Throughout his career, Steve has served on numerous nonprofit boards supporting economic, social and health justice, including Tides Foundation, Positive Coaching Alliance, and Renaissance Entrepreneurship Center. He currently serves on the BU Sargent Clinical Advisory Board and the ACT for Aphasia Stakeholder Advisory Board (University of Pittsburgh). Steve earned a BA from Yale University and an MBA from the Stanford University Graduate School of Business.
Tony Stayner is the Managing Director of the Excelsior Impact Fund, a charitable fund that represents contributions from multiple families and invests to create the world we want for future generations. He is a member of the Toniic T100 impact investor network and helps lead impact investing activities at SV2. In 2019, he was honored to receive the Laura Arrillaga Andreessen Social Impact Award. He has used his experience as a Silicon Valley software executive to mentor numerous social entrepreneurs. He also serves on the boards of the Pacific Institute and of Water.org. Tony’s MBA is from Stanford’s Graduate School of Business and JD is from the University of California at Berkeley’s School of Law (he attended Harvard Law School during his third year of law school on an exchange program). Tony graduated Phi Beta Kappa with an A. B. in Economics and Mathematics from the University of California at Davis.
In addition to her service on the board of Stroke Onward, Karen Jordan has been involved with JDRF since 2008, when her daughter Ali was diagnosed with autoimmune Type 1 Diabetes. She is a member of the International Board of Directors, Chair of the Research Committee (which provides strategic guidance and governance for JDRF’s grant portfolio), and Vice Chair of the Funding Committee. She also serves on the JDRF T1D Fund Board, a venture philanthropy fund with $175MM assets under management, and on JDRF’s Northern California Chapter Board. She is a member of the Joint Steering Committee for the JDRF Northern California Center of Excellence at Stanford and UCSF. She is the inaugural recipient of JDRF’s John Brady Award for Innovation.
Karen is Chair of the Stanford Medicine Community Council, and serves on the Stanford Health Care Board and the Stanford Athletics Board. She is the recipient of the Stanford University Governors’ Award.
Her previous non-profit work includes service on different boards including, among others, Starlight Children’s Foundation, Stanford GSB Alumni Association and the Portola Valley School District. She was a member of the group who founded Summit Prep, a charter school profiled in Waiting for Superman.
Karen earned her B.A. in Economics-Business from UCLA and her MBA from the Stanford Graduate School of Business. She has completed TPW’s year-long program on strategic philanthropy. She has worked as an investment banker and with the Mayor’s Office in Los Angeles.
Whitney Hardy grew up in Truckee, California where she excelled academically and athletically. Competing at an elite level of soccer throughout her childhood fueled a fierce and team-driven spirit. She left California for Boston to attend Tufts University where she was a four-year member and two-year captain of the Women’s varsity soccer team.
After graduating from Tufts in 2010, Whitney spent a year traveling both the United States and South America before moving back to Boston for work in 2011. From 2011 to 2014, she lived in a tiny apartment in South Boston and worked at a venture debt firm. Then came the evening of February 20, 2014.
This evening began like any other typical evening for Whitney: after a long day of work, she went for a run as a way to decompress. Whitney recalls the night of the accident–or rather, she recalls what she has been told. “I don’t actually remember getting hurt. From the information I’ve been told…I liked to go for runs after work to mentally release all of the stress and feel better about getting exercise. So I went for a run and it was dusk out, which in the long run wasn’t a good idea, but that’s in the past.” It was dark. Whitney was moving fast. So was the car. Whitney shares, “my head hit the ground so hard that I suffered a traumatic brain injury (TBI) during the accident.”
When asked at what point she begins remembering the timeline, Whitney explains that she doesn’t know. She says, “I can tell you what I don’t remember though: any of the time in the hospital at the Boston Medical Center in the trauma unit, at Spaulding Rehab Center, leaving the hospital, or moving into the first apartment complex that I lived in.” This is months of hospital time erased from her memory. She suffered a TBI and continues to experience short-term memory loss and executive function impairment to this day.
Three and a half years after her injury, in 2017, Whitney moved back home to Truckee. Now just under a decade after her injury, Whitney is continuing to explore her identity, the impacts of her injury, and the growth from living with TBI.
The struggle between independence and dependence is something that Whitney has faced post-accident. She said: “Before I got hurt, I was the one doing all the planning for parties… I’ll take care of organizing that and text you guys and you can all come. And now, I don’t have that ability. I kind of just have to ask or plan way further in advance. Another big part of the transition is learning that it is okay to ask for help. That is something that I’ve learned from this trip. It’s not something abnormal to have to ask for help. It’s not because you got hurt that you need help, it’s just natural.”
There is a lot that changed post-injury to her way of life that she still struggles with today. She explains, “That’s kind of the hardest part for me. I don’t like to accept that life is different so I just keep pushing and sometimes I do too much or I take on too much and I don’t have the awareness of the fact that it is overdoing it. So that’s a really hard part for me, saying no, I can’t do that where I want to but I’m overloaded…I don’t want to feel like [I] have to give up everything [I’ve] done before [I] got hurt but it’s changing hats and accepting that it’s not the same way. [I] can’t do what you used to do in the same way. [I] have to write things down, [I] have to focus on [my] abilities at the moment…After I was injured, I couldn’t do anything independently for a long time. So that’s kind of the definition of my life. Okay so what has my team done and how can I kind of create independence from that.”
When asked what Stroke Across America means to her, Whitney talks about how it’s hard to just describe in one sentence;“it means camaraderie and raising awareness for a team effort of brain injuries and their caretakers and the survivors because it’s not just a one person effort.” After her injury, Whitney explains “the definition of my life” became her support system and the effort put forth to help her grow.
Team is a keyword in Whitney’s vocabulary because of the way the interdependence that comes with teammates has shaped her life, both pre-accident with soccer and post-accident in everyday life. Interdependence is a valuable lesson for everybody to understand, and one that Whitney exemplifies in her life.
Whitney is just one of many who suffer from TBI. To her other TBI survivors and teammates out there, Whitney has a message: “Be patient because things aren’t going to change quickly and you have to accept that life as you had is now different and you have to alter the normal. So what was isn’t what is and just adjusting to that acceptance.”
Michael Obel-Omia currently resides in Barrington, Rhode Island with his wife, Carolyn, and three children, Jackson, Liza, and Zachary. Prior to his stroke in 2016, Michael was an educator at many different schools including Perkiomen School, Roxbury Latin, William Penn Charter School, Paul Cuffee School, and Cambridge Friends School, where he held titles including English teacher, headmaster, and Director of Admissions.
His entrance to education was not a planned one: in 1986, the course he wanted to take while at Middlebury College was closed, so a professor recommended the course Black American Literature. Michael shares how it was from here, this Black American Literature Course, where he fell in love with English and education: “It was fantastic. 1986. Terrific. Great great course. Wonderful wonderful wonderful stories by black writers. I loved it. [Previously] I wanted to be a lawyer or something, but I fell in love with English in 1986. I started to read everything from there. I fell in love with teaching.”
Aside from a passion for English, cycling has been a major component to Michael’s life. In 2009, Michael cycled across the country for the first time. Anaheim, CA to New York City, NY. “12 days, 12 guys, 24 hours a day. Unbelievable. It felt great. Cycle Across America, one way or another.”
Fast forward a few years, on May 21, 2016, Michael suffered an ischemic stroke. In the aftermath of the stroke, Michael struggled to accept the changes that would occur in his life at first, but eventually has come to accept the changes in his identity. He explains, “I had so many ambitions, so many ideas, I wanted to do so much more. And there I had an ischemic stroke. But who I am, what I am, what I do, is driving.”
In his post-stroke life, cycling and English remain key aspects to Michael’s life. After he got home from the hospital, Michael hopped on a stationary bike. His goal: the Pan Mass Challenge, a 75 mile ride through Massachusetts. Michael recounts this experience: “So in June 2016, I got on a bicycle. Every day I bicycled, I bicycled, I bicycled, it was stationary of course. I said let me out. Carolyn, who I love so much- I said I need to go out. She said you can’t do it. I said I have to do it.”
A month later in July, Michael finally “got out” and on a bicycle outside. “I got on a bicycle in July 2016. I got on a bicycle and I bicycled on a bicycle path. I was so happy. Four miles total, I fell three times. I bicycled, I stopped, I fell down. Turned around, passed the YMCA, fell down. Cycled home, crashed. Three times, four miles, three times, crash crash crash. I was so dispirited, so sad, but I was determined to do something. So September 25, 2016, I cycled 25 miles. Within four months of stroke, to cycle 25 miles, I cycled 25 miles to say I could do this. I had a stroke, I could do this. I say I’m a cyclist.”
In addition to his identity as a cyclist, English has continued to leave a lasting imprint on Michael’s life. Shortly after his stroke, Michael wrote three articles for NPR’s This I Believe because “I love to talk about what I am doing. Aphasia is difficult communication, but I try so hard to speak everything right now with aphasia.” With this, “every day, every day, every day, five and a half years, I write in my journals. Everything I am doing. Now 475 people every day [receive] what I journal from aphasia.” Michael’s musings have become a part of his daily routine, where he summarizes his day to hundreds of loved ones from all aspects of his life.
In his musings, Michael also includes a poem that reminds him of the day. Poetry is another key part of Michael’s identity. After his stroke, he explains “I couldn’t say much, so I started writing poetry.” After a few of his poems were published, he decided to create a compilation of them. This birthed Finding My Words: Aphasia Poetry, his published book of poetry. Michael explains his relationship with poet as “So now I’m a poet. I love that. Poetry is what it is, unlike anything else, poetry is expressing myself, my feelings. Because of poetry, I can write down my difficulties and my problems. So I sit down to write poetry. Some of it is no good, but some of it is very powerful.”
Stroke Across America has proved to be both rewarding and challenging for Michael. He says, “I can do this every day. Every day. I gotta do it. Every day. Every day I gotta do it. I can do this. My hands hurt sometimes, my left hand is pretty weak. I have to ride, I have to do Stroke Across America. Tomorrow morning, I’ll be very anxious. I’ll wake up early tomorrow morning, I’ll be anxious. 64 miles. Can I do it? Can I do it again? But I’ll do it.”
In everything Michael does, he lives the motto “improving, always improving.”
Emily grew up in North Caldwell, New Jersey, and is currently a student at Washington University in St. Louis studying Environmental Analysis, Global Health, and the Business of Social Impact. In addition to her studies at school, Emily is a member of the Varsity softball team (go bears!) and is always up for an adventure to go find dessert. She got involved with Stroke Across America through her Grandfather, Joe Golden, who has ridden his bike across the country twice before having a stroke. Her internship role, among other responsibilities, is helping to coordinate events, and of course, providing endless love for Rusti.
Alex Rubin is a rising senior and member of the varsity softball team at Washington University in St. Louis. An architecture major and business of sports minor, however, her true passions lie more within creative media and the outdoors. Aside from bathing Rusti and serving as comedic relief for the trip, Alex manages on-the-road content for social media and documentary purposes.
Jodi Kravitz has always worked at the intersection of social mission and innovation. Before being recruited to help launch Stroke Onward, Jodi worked for almost a decade with FIRST, an award winning nonprofit STEM inspiration program. Her responsibilities with FIRST LEGO League included program operations and partner relationships in more than 80 countries. She began her career working in strategic planning and other key roles for multiple national healthcare providers. Jodi has volunteered extensively for public television and other causes from her home on the seacoast in New Hampshire. Jodi received an MBA from Vanderbilt and a BA from Yale University.