By Swarna Kuruganti and Mukul Pandya
When Dr. Swathi Kiran was an undergraduate student in India, she became fascinated by how some brain injuries could cause very specific language deficits. This early interest blossomed into a career dedicated to understanding and treating aphasia – a language disorder that affects about one-third of stroke survivors.
“I was fascinated with trying to figure out how the brain does different things, including sleep and speaking multiple languages,” Dr. Kiran recalls. This curiosity led her to pursue graduate studies at Northwestern University, where she explored the complex relationship between brain damage and language impairment.
Now a professor at Boston University and a leader in the field of aphasia research, Dr. Kiran is pioneering innovative approaches to language recovery that challenge long-held assumptions about how the brain heals after injury. Her work offers new
hope for the millions of people worldwide struggling to regain their ability to communicate after a stroke.
Traditionally, aphasia treatment has followed a “start from scratch” approach, attempting to reteach language skills as if to a child. Dr. Kiran’s research suggests this may not be the most effective strategy. “We had this idea that maybe you don’t want to take an adult brain that has learned so much language — and now had a stroke — and teach them like they’re babies.”
Instead, Dr. Kiran hypothesized that a better approach might be to help patients reconnect and reorganize their existing knowledge of language. This insight led to a new treatment paradigm that focuses on training more complex language skills rather than starting with the basics.
In a groundbreaking study, Dr. Kiran and her colleagues found that training stroke patients on more difficult, complicated words actually led to improvements in simpler words – even without direct practice. This “complexity effect” has since been replicated across various aspects of language, from vocabulary to grammar.
“When we train patients who had a stroke to learn more difficult, complicated information as they were relearning words, they actually learned the easier words without actually receiving the therapy,” Dr. Kiran explains. This counterintuitive approach taps into the brain’s remarkable capacity for plasticity – its ability to rewire and reorganize itself in response to experience and training.
Dr. Kiran’s research has significant implications for stroke survivors’ rehabilitation needs, particularly in addressing their mental and emotional challenges. By focusing on complex language skills, her approach not only improves language function but also potentially boosts confidence and self-esteem. Survivors who can tackle more sophisticated language tasks may feel a greater sense of progress and accomplishment, which can positively impact their emotional well-being.
Further, Dr. Kiran’s work emphasizes the importance of consistent, sustained practice in driving neuroplasticity. “What we have found is that consistent, sustained practice is what improves behavior,” she notes. “And in my own work, looking at brain imaging, trying to understand where in the brain this recovery is happening, that level of sustained practice is what changes the brain.”
Dr. Kiran’s research paper, titled “Neuroplasticity of Language Networks in Aphasia: Advances, Updates, and Future Challenges,” provides a comprehensive overview of the complex neural processes underlying language recovery after stroke. Her research shows that recovery is not a simple matter of reactivating damaged brain areas, but rather involves a dynamic reorganization of entire language networks.
One key insight from this research is the identification of different phases of recovery, each characterized by distinct neurophysiological changes. In the acute phase, immediately following a stroke, a cascade of events occurs in the brain, including inflammation, changes in blood flow, and disruption of neural connections. This is followed by a subacute phase, where the brain begins to repair itself through processes like synaptogenesis (the formation of new neural connections) and neurogenesis (the growth of new neurons).
It’s in the chronic phase, however, where Dr. Kiran’s work has been particularly illuminating. “Although physiological changes occurring during the repair phase have generally subsided as the brain reaches a stable state,” she writes, “mechanisms that facilitate plasticity (i.e., synaptic sprouting) remain at play and are adaptable to environmental experience.” This underscores the brain’s ongoing capacity for change, even years after the initial injury.
Dr. Kiran’s research highlights several factors that influence this long-term neuroplasticity. These include both “organism intrinsic” variables – such as the patient’s age, the size and location of the brain lesion, and the integrity of white matter tracts – and “organism extrinsic” factors, particularly the nature and intensity of language therapy.
Interestingly, Dr. Kiran’s work suggests that the traditional focus on specific brain regions may be too narrow. Instead, she advocates for a network approach to understanding language recovery. This perspective recognizes that language processing involves complex interactions between multiple brain areas, and that effective recovery often involves reorganization of these broader networks.
“It seems reasonable to posit that language recovery engages the same complex network of left and right hemisphere regions,” Dr. Kiran writes, “with specific regions in the network becoming preferentially involved during the course of recovery depending on organism intrinsic and extrinsic factors.”
This network-based understanding of recovery has important implications for treatment. It suggests that therapies should aim not just to reactivate specific damaged areas, but to promote beneficial reorganization of entire language networks. This might involve strengthening connections between spared language areas, recruiting new regions to support language functions, or even enhancing the integration of language networks with other cognitive systems.
For stroke survivors and their care partners, these findings offer important insights. Dr. Kiran’s research challenges the longstanding notion of a fixed “recovery window,” revealing that the potential for improvement extends well beyond the initial months post-stroke. The brain’s remarkable capacity for change, or neuroplasticity, remains active even in chronic stages of aphasia, supporting the case for continued investment in rehabilitation efforts. This insight encourages survivors and their families to persist in their recovery journey, regardless of how much time has passed since the stroke.
Moreover, Dr. Kiran’s work suggests that effective therapy should cast a wider net, targeting not just isolated language skills, but broader language networks and their integration with other cognitive functions. This holistic approach recognizes the complex interplay of various brain regions in language processing and recovery. The research also underscores the critical role of therapy intensity and consistency in driving neuroplasticity and functional improvements, emphasizing the importance of regular, committed practice.
Finally, Dr. Kiran’s findings highlight the significant influence of individual factors, both biological and environmental, on recovery trajectories. This underscores the need for personalized treatment approaches, tailored to each survivor’s unique circumstances and needs. Taken together, these insights offer a more nuanced and optimistic view of aphasia recovery, empowering survivors and their care partners
with knowledge to guide their rehabilitation decisions and maintain hope throughout their journey.
While the complexity and neuroplasticity approaches offer a promising theoretical framework, delivering intensive, personalized therapy to aphasia patients remains a practical challenge. To address this, Dr. Kiran has embraced technology as an ally in aphasia rehabilitation.
Dr. Kiran worked with colleagues including Veera Anantha, Founder and CEO, Constant Therapy Health, to launch Constant Therapy, a mobile app that delivers customized language and cognitive exercises to patients. The app, which has been used by tens of thousands of people with aphasia, allows for frequent, targeted practice outside of clinical settings.
“The way the app is designed is that as individuals practice therapy, it records the accuracy and response time, which in turn collects millions of data points,” Dr. Kiran notes. This wealth of data not only helps refine individual treatment plans but also provides insights into the recovery process on a broader scale.
The app’s success highlights a crucial factor in aphasia recovery: the intensity and consistency of practice. “For the brain to actually recover and for neuroplasticity to instantiate,” Dr. Kiran explains, “you cannot recover language without a lot of practice.” Digital tools like Constant Therapy make it possible for patients to engage in the kind of repeated, focused practice that drives language recovery.
In clinical trials, the impact of this technology-enabled approach was clear. “If you ask people to come to the clinical therapy, by the time they come, they settle down and they actually do the therapy. They get about 40 minutes of therapy,” Dr. Kiran explains. “But if you ask them to practice at home and then come to the clinic, they get four times that amount of therapy because they’re practicing at home, and then they get that 40 minutes extra.”
In a groundbreaking move for the home health industry, Elara Caring partnered with Constant Therapy Health in April 2024 to implement AI-driven, evidence-based speech-language and cognitive therapy across their extensive network of clinicians and patients.
This increased access to therapy has profound implications for recovery. Dr. Kiran’s research has shown that consistent, sustained practice is what drives both behavioral improvements and changes in brain activation patterns. The app allows patients to practice anywhere, anytime – even while waiting for a bus, as some study participants reported.
For stroke survivors and their care partners, the Constant Therapy app represents a significant leap forward in aphasia rehabilitation, offering benefits that address many of the challenges traditionally associated with therapy. At its core, the app dramatically increases therapy time without the need for additional clinical visits, allowing users to engage in rehabilitative exercises at their own pace and on their own schedule.
By facilitating consistent engagement with therapy between clinical sessions, the app helps maintain momentum in the recovery process, bridging the gaps between in-person treatments. Perhaps most exciting for many users is the potential for faster progress due to more frequent practice, as the app allows for daily engagement with therapeutic exercises, far beyond what is typically possible with traditional therapy schedules.
However, Dr. Kiran also acknowledges some challenges. Access to technology and internet connectivity can be barriers for some patients, potentially exacerbating healthcare disparities. Additionally, while older adults have shown surprising comfort with technology when properly trained, maintaining motivation for consistent practice remains a challenge for some users.
Despite these challenges, the success of Constant Therapy demonstrates the potential of technology to revolutionize aphasia rehabilitation.
One of the significant challenges in understanding the mental health needs of stroke survivors, particularly those with aphasia, stems from a historical oversight in clinical research. Dr. Kiran points out that for many years, people with aphasia were routinely excluded from stroke studies and clinical trials.
“All the clinical trials that have been done over the decades have involved motor rehabilitation, upper arm, lower arm, extremity, and they have mostly excluded people with aphasia because they don’t know how to consent people with aphasia and communicate with them,” Dr. Kiran explains. This exclusion has led to a significant gap in our understanding of how aphasia affects overall recovery, including mental health aspects.
To address this gap, researchers like Dr. Aura Kagan have been pioneering a more holistic approach to aphasia treatment and research. Dr. Kagan’s work on the Life Participation Approach to Aphasia (LPAA) emphasizes the importance of considering
the whole person, including their social context, life goals, and emotional well being.
“There has been this general approach, a movement, to understand the life participation of people who have aphasia,” Dr. Kiran notes. “The whole idea is that aphasia [should be considered] in perspective of this bigger context of their life and their finances and their social and the support and a caregiver.”
This shift towards a more comprehensive understanding of aphasia and its impacts is helping to bridge the gap in our knowledge of the mental health challenges faced by stroke survivors with aphasia.
While Dr. Kiran is optimistic about the potential of AI and other emerging technologies to assist stroke survivors, she also cautions about some of the challenges these technologies face. One area of concern is the use of AI to complete sentences or predict speech for individuals with aphasia.
“I generally have been cautioning people who have been doing that work,” Dr. Kiran says. She explains that current AI models may not accurately reflect the nuanced struggles of people with aphasia. “I don’t think the models accurately reflect the struggles of people with aphasia.” The risk is that these AI systems might produce inaccurate or inappropriate completions, which could frustrate stroke
survivors and potentially hinder their communication efforts. “As more researchers interact with stroke survivors to understand their speech and implement them into the models, the technology will improve significantly,” Dr. Kiran notes.
However, Dr. Kiran remains hopeful about the future potential of AI in aphasia treatment. She sees great promise in areas such as personalized therapy, where AI could help tailor treatment approaches to individual needs. She also notes the positive impact of technologies like speech-to-text and closed captioning, which have become more widely accepted and used in therapy settings.
As populations age and stroke survival rates improve, the need for effective aphasia treatments will only grow. Dr. Kiran’s approach – combining cutting-edge neuroscience with practical, technology-enabled solutions – provides a model for meeting this challenge.
Her work advances our understanding of language recovery and also highlights the importance of addressing the holistic needs of stroke survivors, including their mental and emotional well-being. As research continues and technologies improve, there is hope for increasingly effective, personalized treatments that can help stroke survivors reclaim their voices and rebuild their lives.
“My passion is to understand and improve neuroplasticity after brain damage,” Dr. Kiran says. “I really hope to crack that problem by the time I die.” With her scientific approach and dedication to translating research into practical solutions, she is on her way to rewriting the story of aphasia recovery, one word – and one rewired neural connection – at a time.
Swarna Kuruganti is the Managing Partner at Si-7 LLC, where she shares her thoughtful perspectives on AI’s impact as a speaker and writer, and educator. She leads enterprise AI at US Foods.
Her experiences include leading innovative, emerging technology-enabled solutions, including traditional AI and GenAI, across healthcare and other industries. She has helped define transformed human experiences, while realizing business benefits.
Swarna also contributes to the AI discourse through her writing, with articles in CXOTech, PEX and on LinkedIn, examining business lessons and emerging trends in artificial intelligence.
Her co-authored articles for the American Stroke Association explore the meaningful intersection of technology and recovery, and how AI can help stroke survivors rebuild their sense of self.
She has most recently contributed to industry conversations on AI through speaking engagements at SSON Houston, Tampa Bay Tech and EX3 Labs led XR panel, where she shared insights on implementation approaches while acknowledging the complexities and ongoing learning inherent in this evolving field.
Over her 24+ years as a management consultant, corporate leader and entrepreneur, Swarna has grown a commitment to finding the balance between technological advancement and human-centered outcomes, continually seeking to understand how AI can serve human needs rather than technology for its own sake.
Swarna has a Master’s degree in Information Systems from Baylor University.
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.
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.