By Swarna Kuruganti and Mukul Pandya
Psychologist Carl Jung is believed to have said, “I am not what happened to me; I am what I choose to become.” This statement aptly describes the inspiring journey of Ingrid Clarfield, a gifted piano teacher who has refused to let a life-altering stroke define her, derail her passion for music and teaching, or steal her identity.
Clarfield’s story, captured in the inspiring documentary “Take a Bow,” (accessible via Amazon Prime) is one of courage, creativity, and resilience. It shows how human ingenuity, aided by technology, can combine to help stroke survivors reclaim their identities and continue pursuing their life’s work.
In March 2007, Clarfield’s life took an unexpected turn. A professor of piano at Westminster Choir College in Princeton, N.J., for more than four decades, Clarfield awoke one morning, stood up, and immediately collapsed. At age 60, she had suffered a severe stroke that left her unable to use her left arm and leg.
For a pianist and teacher whose life revolved around the keyboard, this could have been a career-ending blow. But Clarfield, drawing on an inner strength rooted in her family history of resilience, refused to accept this as the end of her musical journey. “My parents fled Nazi Germany, so we’re survivors,” Clarfield says. This survivor’s mentality, ingrained in her from childhood, became the foundation for her ability to bounce forward from her stroke.
Faced with the inability to play piano with both hands, many might have given up. Clarfield, however, saw this as a challenge to overcome rather than an insurmountable obstacle. She began to explore ways to continue teaching and performing, refusing to be sidelined by her physical limitations.
Her innovative solution was to enlist “guest left hand artists” – pianists who would play the left-hand parts while she played the right. This approach allowed her to continue performing in lecture-recitals. “I’ve had more than 40 people do it,” Clarfield says. “One of the greatest challenges is finding the right person. Usually after doing my research I’m lucky and find somebody who’s a wonderful musician and really committed to doing a great job by practicing a lot of the music I sent in advance.”
This method not only allowed Clarfield to continue her work but also opened up new avenues for musical collaboration and teaching.
In her teaching, Clarfield found that her experience actually enhanced her ability to convey certain musical concepts. For example, when teaching students about the left hand in a piece, she now has them play the left hand while she plays the right – a reversal of roles that provides a unique learning experience.
“I discovered that my students do that better than anyone because of that,” she says. “I had to learn to do that. There are times when I try to play both parts with one hand, and I hit a wrong note. And when my students laugh, I say, ‘Don’t laugh. It’s okay. I’m doing fine.’”
While Clarfield’s “guest left hand” approach was innovative, technology has played an equally crucial role in her journey to keep teaching and performing. Various assistive devices helped her regain mobility and independence, allowing her to focus on her music.
A significant technological aid that proved transformative in the initial weeks after Clarfield’s stroke was the Bioness device for her left arm. This system, known as the Bioness H200 Wireless Hand Rehabilitation System, uses functional electrical stimulation (FES) to help patients regain hand and arm function. The H200 consists of a lightweight, ergonomically designed orthosis that fits around the forearm and hand, and a small control unit that can be worn on the waist or arm.
The Bioness system works by delivering low-level electrical stimulation to activate nerves and muscles in the forearm and hand. This stimulation can help improve hand function, increase range of motion, reduce muscle spasms, and even reeducate muscles over time. For stroke survivors like Clarfield, this can mean regaining the ability to open and close the hand, grasp objects, and perform other essential daily tasks.
For Clarfield, the Bioness device represented a moment of hope in her recovery journey. “I still remember the very first time I felt my fingers move. I was so excited,” she recalls. While the device didn’t fully restore function to her left hand, it provided enough improvement to boost her spirits and fuel her determination to continue her musical career.
Another crucial aid for Clarfield, which she started using about a year later, was a device called the WalkAide. This small, battery-powered device attaches to her leg and uses electrical stimulation to activate nerves and muscles, enabling her to walk. The WalkAide works by addressing a condition known as foot drop, which is common among stroke survivors and can make walking difficult and unsafe.
Before discovering the WalkAide, Clarfield was resistant to traditional assistive devices for walking. She particularly disliked the idea of wearing a foot brace, known as an AFO (Ankle Foot Orthosis). “I hated it, because it made you wear big, ugly shoes, and you couldn’t really walk. Well, I couldn’t,” she notes. This reluctance to compromise on her appearance and mobility led her to seek out more advanced technological solutions.
The WalkAide is worn just below the knee and uses advanced tilt sensor technology to detect the leg’s position. As the user walks, the device sends electrical signals to the nerve that controls ankle dorsiflexion (lifting the foot). This stimulation causes the foot to lift at the appropriate time during the gait cycle, allowing for a more natural and efficient walking pattern. The result is improved mobility, reduced risk of falls, and increased independence for users like Clarfield.
“I’ve had [my WalkAide] for 15 years,” Clarfield says. “It still works. Unfortunately, many people can’t afford it — it costs $5,000 to $6,000. Now you may be able to buy it for less, but I can’t walk without it.”
The impact of this technology on Clarfield’s life cannot be overstated. It has allowed her to regain mobility, which was crucial for her ability to continue teaching and performing. “I can walk. I can’t imagine not having it,” she says. It has also allowed her to go regularly for physical and occupational therapy at the Lawrence Rehab Center in New Jersey for the past 17 years.
The use of these technologies in Clarfield’s recovery underscores the potential of assistive devices to improve the quality of life and mental health for stroke survivors. However, as Clarfield notes, the high cost of these devices can be a barrier for many patients. This highlights the need for continued R&D in this field, with a focus on making such technologies more accessible to all who need them.
Clarfield’s use of technology is just one aspect of her adaptability and resilience. She also had to rethink many aspects of her daily life and professional practice, finding creative solutions to challenges that many would find overwhelming.
For instance, she has adapted her wardrobe to accommodate her limited mobility. “I took all my earrings that had posts and converted them into ones with hooks that I could put into my ear piercing with my one good hand,” she explains. This attention to detail extends to her necklaces, which now use magnetic clasps for easy wearing.
Clarfield’s adaptability extended to her approach to therapy as well. In the first few weeks after the stroke, she was dismissive of speech therapy, finding the exercises frustrating and irrelevant. “I said, ‘This is stupid. I won’t do it,’” she recalls. However, her perspective changed when she found a therapist who tailored the approach to her needs. This therapist studied Clarfield’s website and asked questions about her work and interests, making the therapy both engaging and relevant. ‘She had taken the time to see what kind of music books I had written and the work I had done. She asked me to make a list of things I would need if I had to travel to attend a conference,” Clarfield explains. This personalized approach made a significant difference in her engagement with and benefit from speech therapy.
While Clarfield has made effective use of existing technologies, the potential of artificial intelligence (AI) and advanced robotics in assisting stroke survivors is an area of growing interest and debate. When presented with the possibility of a robotic arm that could perform the left-hand parts of piano pieces, Clarfield’s response reveals both her openness to innovation and her deep understanding of the nuances of musical performance.
“I would love to say, it’s a great idea, go for it,” she says. However, she also points out potential challenges: “Music is so much about emotion and freedom. I don’t play metronomically. If I’m playing Chopin, there’s freedom all over the place. Somebody has to be able to follow me.”
This insight highlights a crucial aspect of music that current AI and robotic technologies struggle to replicate – the emotional interpretation and spontaneity that are hallmarks of great musical performances. “I am also the kind of performer who talks when I play,” Clarfield notes. “I may say, ‘This is a perfect example of where [French composer Claude] Debussy does this. And I stop, so the left hand person has to know me and the music well enough to do this.”
While current technology might not be able to fully replicate the nuanced interaction between musicians, Clarfield remains open to future possibilities. “It would intrigue me to see somebody try it,” she says, demonstrating her continued curiosity and willingness to embrace new ideas.
The idea of brain-computer interfaces (BCI) that could potentially translate thought into action for a robotic arm is another area of emerging technology that could benefit stroke survivors. While Clarfield expresses skepticism about using such technology herself at this point in her career, she acknowledges that it might have been appealing earlier in her recovery journey. “Had you asked me that 17 years ago, you might have gotten a different answer,” she says. This perspective underscores the importance of timing and individual circumstances in the adoption of assistive technologies.
Clarfield’s openness extends to the use of AI in music composition. When asked about the possibility of AI composing pieces for one-handed pianists, she responds with enthusiasm: “I am curious to see if AI would do this well. Would it sound like one hand or like two hands? A good one-hand piece sounds like two hands.” This curiosity about AI’s potential in music composition reflects Clarfield’s engagement with new developments in her field.
Despite her embrace of technology, Clarfield’s story ultimately underscores the value of human connection and emotion in both music and recovery. Her success in maintaining a positive mental attitude in her recovery and continuing her career owes as much to her personality, determination, and ability to connect with others as it does to any technological aid.
This is evident in her approach to performance with her “guest left hand” collaborators. “I don’t treat them like robots,” she notes. “I’ll say, hey, what do you think? I make jokes about it. We don’t start together. We’re not perfect. I go, Oops, I screwed that one up. So that’s music for me. We’re not perfect.”
It’s also clear in her teaching philosophy, which emphasizes individual interpretation and emotion over rigid adherence to a score. “I don’t want your child to be a robot,” she tells parents who question why their child’s performance differs from a recording they’ve heard.
Clarfield’s journey highlights the importance of community in recovery. She speaks fondly of the friendships she’s formed with other stroke survivors, including an annual dinner she shares with a fellow survivor on their “stroke-aversary.”
Today, 17 years after her stroke, Clarfield continues to teach, perform, and inspire. She has written numerous books on piano pedagogy, including a new three-book series scheduled to be released soon. She travels for conferences and masterclasses, sharing her knowledge and her story with musicians and educators around the country.
As AI and robotic technologies continue to advance, Clarfield’s story offers valuable insights into their potential applications and limitations in fields that require nuanced human interaction and emotional expression. It reminds us that while technology can be a powerful enabler, it is the human spirit – with its capacity for creativity and connection – that truly drives transformation and achievement.
Clarfield’s journey illustrates Carl Jung’s sentiment perfectly. She has indeed become what she chose to become – not a victim of circumstance, but a survivor, an innovator, and an inspiration to musicians and stroke survivors alike.
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.