07 Nov Carepartner vs. Caregiver
Chapter 9 of our book Identity Theft: Rediscovering Ourselves After Stroke is titled “Stroke is a Family Illness.” In that chapter, we talk about the impact one person’s stroke has on an entire family....
Chapter 9 of our book Identity Theft: Rediscovering Ourselves After Stroke is titled “Stroke is a Family Illness.” In that chapter, we talk about the impact one person’s stroke has on an entire family....
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.