Real Talk with Tina and Ann
Tina and Ann met as journalists covering a capital murder trial, 15 years ago. Tina has been a tv and radio personality and has three children. Ann has a master's in counseling and has worked in the jail system, was a director of a battered woman's shelter/rape crisis center, worked as an assistant director at a school for children with autism, worked with abused kids and is currently raising her three children who have autism. She also is autistic and was told would not graduate high school, but as you can see, she has accomplished so much more. The duo share their stories of overcoming and interview people who are making it, despite what has happened. This is more than just two moms sharing their lives. This is two women who have overcome some of life's hardest obstacles. Join us every Wednesday as we go through life's journey together. There is purpose in the pain and hope in the journey.
Real Talk with Tina and Ann
Life in Tandem: Love, Loss, and Identity After Stroke with Stroke Onward's Deb Meyerson and Steve Zuckerman
A single weekend can reroute a life. When Deborah Meyerson, a tenured Stanford professor, suffered a stroke that stole her speech and altered her body, she and her husband, Steve Zuckerman, had to reimagine everything—career, communication, purpose, and the very shape of partnership. What began as an “it’ll pass” blip became a blueprint for growing forward, not going back.
We dig into what aphasia actually is—beyond speech—and how it reshapes identity, relationships, and daily life. Deb shares how writing the second edition of Identity Theft: Rediscovering Ourselves After Stroke became both research and therapy, drawing on dozens of survivor and care partner stories to reveal two truths: recovery can keep unfolding for years, and identity work is as essential as physical rehab. Steve opens up about care partnership without resentment, the constant calibration of boundaries, and why permission to grieve is inseparable from permission to grow.
You’ll also hear about Stroke Onward, their nonprofit pushing the healthcare system to support the emotional journey of recovery, and the Stroke Onward Community Circle (SOCC)—an interactive hub connecting survivors, families, and clinicians with free resources, conversation, and advocacy. We explore technology that extends agency and hope: an AI-generated voice that amplifies Deb’s talks, a neural sleeve that improves gait, and a newly approved vagus nerve stimulation implant that pairs with intensive therapy to accelerate learning and function. The thread through it all is practical wisdom: find the “why” beneath your old “what,” meet people where they are, and build a life you can love in tandem.
Subscribe, share this story with someone who needs it, and leave a review to help others find these conversations. Then visit strokeonward.org to explore resources, join the community, and keep the movement toward whole‑person recovery growing.
Welcome to Real Talk with Tina and Anne. I am Anne, and today's episode is called Life in Tandem for a Reason. And I named it that because this is a partnership with perseverance and purpose after life took an unexpected turn. My guests are Deborah Meyerson. She was a former tenured Stanford professor, and Steve Zuckerman, her husband and care partner. Together they co-authored Identity Theft: Rediscovering Ourselves After Stroke. And this is the second edition. And they have founded the nonprofit Stroke Onward to support stroke survivors and families, and they help survivors rebuild not just physical strength, but a sense of self. Deborah's 2010 stroke changed everything for her and her husband and her families, her career, her independence, even her voice, but not her determination. And together, Deborah and Steve have redefined what it means to live and love in the aftermath of trauma. Deborah and Steve, thank you so much for being here today. Thank you. Thanks for having us. Let's start at the beginning. You wrote that sometimes we think life will go one way. And then we realize that our plans were not going to happen. I mean, you were a tenured Stanford professor and it didn't go the way that you planned at all. You at first thought your stroke was a blip, but it turned out to be extremely life-altering. Can you take us back to that Labor Day weekend in 2010? What happened?
SPEAKER_01:Uh the for six months before the stroke, I had a really headache, really severe headache. I am so uh the the doctors didn't know, and the the neurologists didn't know. Yeah.
SPEAKER_04:Want me to help a little? Yeah. Yeah. So so Deb had had some symptoms, but went through all the testing you would go through and they didn't find anything. On that Labor Day weekend, we were actually headed to the mountains to Lake Tahoe with two of our three kids and a friend and our dog. And Deb's leg just started acting funny. It didn't hurt, um, but it was kind of buckling a little bit at certain times. Deb being Deb was, yeah, don't worry about it. It's gonna be fine. And we went off. And to make a long story short, um, after a hike and a dinner and Deb sleeping overnight, um, she asked for some aspirin and had trouble reaching for it with her right hand. And somewhere I had heard that if you're having trouble on one side of the body, arm and leg, that could be a sign of a stroke. And so with the leg whacking funny and the arm not working, we just got her straight to a hospital. Uh and and that that began an unwanted journey. Yes. Um that was very quickly, quickly diagnosed as a stroke. Um, and uh and and you mentioned that sort of we thought of it as a blip. Yeah. Um, I'm a I'm an optimist by nature, you know, every cup is three-quarters full. Um and Deb is a workhorse. And, you know, even after the devastating impact, and you know, immediately following the stroke, about 24 hours after the first symptoms of the stroke, Deb was fully paralyzed on the right side, had no voice whatsoever, couldn't get a sound out. You know, she got into therapy, you know, two months in the hospital, lots of complexity. But when she finally got into therapy, things were improving. And we just thought, you know, with access to good therapy and the work ethic that Deb has, eventually we'd get back to life as we knew it. But that said, um, you know, the body and and health had different plans and and Deb still lives while she's recovered a tremendous amount of capability. Um, she still lives with disabilities and particularly the aphasia, which is a communication disorder, yeah, um, made it impossible for her to go back to to being a full-time professor.
SPEAKER_01:Uh I am still uh professor.
SPEAKER_00:Oh, you are? Yeah, yeah, yeah, yeah. Oh, that's amazing. That's great.
SPEAKER_04:No, I think being part of that community is is really important. Uh kind of our work with Stanford now is more with people in the med school uh because of our work around stroke and with stroke onward. Uh but Deb still maintains her affiliation with the School of Education, um, even though she's not actively engaged in that, in that kind of academia anymore.
SPEAKER_00:Okay. Well, you know what? That's amazing that you can still keep that community.
SPEAKER_01:Yeah, yeah.
SPEAKER_00:Yeah, I agree.
SPEAKER_01:Yeah.
SPEAKER_00:You also you just mentioned aphasia. Could you talk more about exactly what that is? I mean, I've known some people that have had that. And I also know of some people that, you know, with lots of disabilities, and you almost feel sometimes that you're trapped. Um, can you talk more about that?
SPEAKER_01:Speech is really important. It's uh and it's two one year after my stroke, I have no speech at all. Really little speech. Wow. And I am it's um really hard to uh be the the f professor of the organizational behavior. Three years after my stri uh uh s joke, I uh really had um knowed uh my dean of the edge school.
SPEAKER_04:Nobody helped?
SPEAKER_01:Yeah.
SPEAKER_04:Stanford has a policy that says if you can't return to your job after three years of medical leave, you know, they need to full position with someone else. And and that was, you know, that was sort of we we sometimes call that trauma number two because that was sort of what forced us to realize that life would be different. You asked about aphasia and um I, you know, that it's a it's a communication disorder. It's not just a speech disorder. So for Deb, aphasia can take many different forms or have many different ramifications. For Deb, hers is what's called expressive aphasia, where she has thoughts clear in her mind, but being able to get them out either through words or she doesn't have use of her right hand, she can type with her left. But the same, you know, again, it's not a speech challenge, it's a communication challenge. So the same difficulty finding words to speak is true finding words to type as well. There are other forms of aphasia, like fluent aphasia, where people say very fluently, but often the words that come out aren't the words they mean. So the meaning isn't there. There's also something called receptive aphasia, which, you know, even for us, it's hard to understand how frustrating that would be, where the hearing is fine. So the sound is getting into the the ears, and but the brain's not processing it. So you hear sounds, but they mean nothing to you. So these are all different forms of aphasia or different manifestations of aphasia. And aphasia, about a third of all stroke survivors suffer some kind of aphasia. And then there are other causes of aphasia as well. But stroke, stroke is the leading cause of aphasia.
SPEAKER_01:And uh the um Gabby Gifford is uh the the gun uh the gun.
SPEAKER_04:She has the the the Gabby Giffords, who's the Congresswoman from Arizona who Right.
SPEAKER_00:I know who she is, yeah.
SPEAKER_04:And and her aphasia is very similar to Deb's, even though um it very different cause, you know, very different kind of injury to the brain, but clearly and that's one of the things about aphasia, but also about stroke more broadly, is the brain is so complicated. And, you know, just if the injury to the brain, whether it's caused by a stroke or by a gunshot wound, if that injury is just, you know, a millimeter to the left or a millimeter to the right, the disabilities that it creates could be dramatically different because, you know, just different parts of the brain control, you know, it's it's the nerve center or the the control center for so much of our really all of our bodily action. So depending on what part is damaged, that's that's what creates very, very different uh effects of a stroke.
SPEAKER_00:You spent two months in four hospitals and came out unable to speak like you're talking about. And for a professor whose life was built on words, you know. I mean, that must have been one of the hardest parts for this. I mean, your life was teaching and making a difference at Stanford, and your loss of identity was a theme that is woven throughout your story and others. So many times what we do, you know, is our mission. That's what who we are. And you said I was still thinking like a social scientist, but my body just wouldn't do what I needed it to do. Could you talk more about that loss of identity?
SPEAKER_01:I am still the the same person, and the the I am not the same person.
SPEAKER_04:It's still it's the the the body is the identity is uh central to my w what I like to say is that is that and there are lots of like funny anecdotes of how we discovered even very early after the stroke, despite Deb's inability to talk at all or move her right side, that that the Deb we knew was still inside. Um and so in a lot of ways, she really is still the same person, same same worth ethic, same ideas, same values, but her ability to express all of that has changed because she has both physical disabilities and most consequentially the aphasia that affects her communication. And when Deb said, you know, so in some ways I'm still the same person, yes, can't necessarily live out that person the same way, and that is a frustration that Deb lives every day.
SPEAKER_00:Yeah, uh three times a day. I'm so sorry for that. I mean, that must really be frustrating. You know, I was a as a kid, I have autism, and so as a kid, it was very difficult for me to speak. It's taken me, it took me years to develop my speech and to get where I am. I understand a little bit of what it feels like for your brain to be saying all these things, but it's not coming out. And it is very frustrating. So I am sorry that you are going through that. Well uh 15 years ago is it's really long time.
SPEAKER_04:Yeah. Yeah, no, but then but then as Deb said, but there are ways in which she's a different person. And you know, right, everybody's identity changes with more life experiences.
SPEAKER_01:And I am a grandmother.
SPEAKER_04:That's a great new identity.
SPEAKER_00:That that's amazing. Yes, that's a beautiful identity.
SPEAKER_04:You know, there while she's incredibly frustrated, she's also a more patient person now than she was. She was forced to be. And so there are ways in which, and that's one of the themes of the book and our is we hate the expression silver lining, we just don't like it because it doesn't feel very silver. But um, but there's a theory called post-traumatic growth. There are ways that when you've suffered something horrible, terrible, you can find ways to grow in the aftermath. And I think that's one of the things that I jokingly say to Deb when she's incredibly frustrated, you know, there's a really good book out there. You should read it again. Um, the one thing to understand, and it's another thing to to live it. It's oh, sure.
SPEAKER_00:Yeah. I mean, when you you talked about this earlier, but when you lost your position at Stanford, and you know, it's it's really amazing what you guys did with that because there are levels of loss, but you did turn it around. And like you're saying, you took a positive spin on it. And you wrote the first edition of identity theft, and now you have just released the second edition, and you have a mission to help others. So taking your pain and turning it into purpose is a beautiful thing. Can you talk about where how that transition that you took and how you got to being able to just say, you know what? We're gonna sit down, we're gonna write this book, and we're going to help others.
SPEAKER_01:Three and a half years after my stroke, I am really depressed. And I am the I am going to write the the book. I d don't know about it.
SPEAKER_04:I mean, you know, for Deb, in many ways, the the process to start writing a book was uh was an act of defiance. You know, it was I I still feel like an academic. They're telling me I can't be a traditional academic, you know, screw that. I'm I'm gonna write a book. And and candidly, when she first said it, I thought she was nuts. Yeah. Um, because at that point, I mean, her speech was far less good than it is now. Um, and and but but it very quickly, you know, as Deb realized that the book she wanted to write was turning this expertise she had around identity as a lens on herself to understand her recovery. The book writing process very quickly became first her journey. I I sometimes say it's the it was the cheapest five years of therapy we ever could have embarked on because it really was a therapeutic process for both of us. Um the five years it's so to write the book and and and it really was in the book writing process that Deb sort of anchored on how important meaning and purpose is to herself, but most people. Yeah. And that one of the things she was suffering most was that sense that the purpose she had around academia and creating knowledge and teaching students and research, she had lost that. But it was really important to her. How could she recreate that in a different form? And that's really what that's really what got her to push through the frustration of writing the book to finish it. Because there were a few times she was ready to throw in the towel, um, understandably. Um, but then also for for us to start stroke onward because we realized we had sort of stumbled on another way for Deb and us to have meaning and purpose in terms of of trying to advance knowledge and improve, improve the healthcare system for for millions.
SPEAKER_00:Right. I love that you took and you figured out another way to communicate. Yeah. I mean, that is just, you know, like you're saying about the glass being three quarters full. I mean, I I just love your perspective. And lots of times it does come down to perspective when we are living life and we have these life-changing moments, and we have to pivot, you know. We just have to figure out how to pivot. How could you talk more about that to people who are maybe they've had some kind of a life-altering event and they have to pivot? Yeah, yeah.
SPEAKER_01:Uh the stroke is uh one thing, and uh a uh old age is the another thing, and the the cancer is uh uh uh and uh green injury and three uh subjects uh in the book are green injury, uh muss three three and ALS. Oh, okay.
SPEAKER_04:I I think you know, our lived experiences with stroke, but we think that kind of what we've learned and what we continue to learn is relevant to a much, much broader, it's really is how do you rebuild after a trauma that changes your life? And I think one of the things, and and we say this in the book, is it's getting past, you know, very often we think of our identities in the job we hold. So Deb's a fifth grade Stanford professor. The real the real door opener was trying to say, okay, what is it about being a Stanford professor that Deb really loves, that Deb really finds meaningful? And we boiled that down to creating and sharing knowledge. That's why she went into academia in the first place. So now if she can't be a university professor full-time, given her current capabilities, is there some other way to create and share knowledge? And that was the opener to like say, yeah, well, we now have this really interesting combination of skills and experiences. Deb as an expert on identity, you know, her lived experience as a stroke survivor, mine as a care partner, my background creating and running nonprofits. Maybe there's a way we can create and share knowledge together that's different than academia. And so I think we're really hesitant to give advice because everybody's situation is different. But the observation we have is that very often people get stuck in the what of their identity rather than the why of their identity. I agree. And and that was a that was a real linchpin for us in moving forward and creating new opportunity.
SPEAKER_00:Yeah. Yeah, I agree. And again, it's about being willing and giving yourself permission to become something different with what you already have, what you already know. You just built upon and became different and allowed yourself to become different. I mean, that's a really beautiful thing. I think that that's such a good lesson for people that come across different things in life that all of a sudden it didn't go the way that we planned.
SPEAKER_01:Yeah.
SPEAKER_00:You know, and that happened, that I mean, that's life. It really is.
SPEAKER_01:Twenty five people are in the book and no, and the and care partners and friends of Yeah, just that in the process of writing the book.
SPEAKER_04:It was funny because Deb people would say to Deb, Oh, you're writing a memoir, and she would say, No. Um, and that's part of the she was still an academic. She didn't want to write a just a personal story. She wanted research, she wanted to understand other people's stories because she knew that her just one of many. Um Deb was saying that, you know, I think we interviewed about 55 people in total, 25 whom were survivors, and the rest were members, care partners, medical professionals, etc. Yes. But you you used a word, if I can. You talked about giving yourself permission to be somebody different. Uh I think that word permission is good in another sense, because the other place where we find people often don't want to give themselves permission, but need to, is the permission to grieve.
SPEAKER_01:Yeah.
SPEAKER_04:That's you've you've lost something. You've you've you could even say you've lost someone, you've lost yourself. Right. And that deserves to be grieved. Yeah. And it's and like people talk about in the context of losing loved ones, you never finish grieving. Yeah. You, you know, that's a lifelong process. You're gonna miss that person forever. Just like Deb is gonna miss her old capabilities and the person she was with them forever. Um but how do you how do you give yourself that permission, but not let it bog you down, not let it become where you live all the time. Yeah. Um, and so I I just I thought your use of the word permission is a um is a really important one.
SPEAKER_00:Well, and it can be used like you're saying, in so many ways. And and we don't have to be bogged down by it. And but being able to move forward with it, I think is what is so important. Just being able to move forward, whatever that looks like. And you guys did that and you did it together. And I love care partner. One of the things I wanted to ask you, Steve, was you know, you're such a good care partner to your wife. Can you please talk about what was happening with you as you watched your very strong wife go through this?
SPEAKER_04:Yeah, I mean, on a bunch of, I mean, one, it was just painful to watch her have to go through this and still is, you know, just whenever there are things that are driving her crazy and when she's frustrated. Um like early on, um, you know, just like I said, I'm an optimist. I'm gonna also just kind of I've lived my life solving problems. And and so, you know, I was sort of it it fit my personality to help. And I've also said many times, if Deb hadn't been the fighter that she was, I'm not sure I would have been a very good care partner. You know, I'm not, I'm not very good at sort of dealing with unhappiness and complacency. And so if she had been a, you know, a complaining stroke survivor, I probably wouldn't have been a very good partner for her. Um, but that's not who she is. She's a fighter and she was gonna do everything she could to make, you know, to get better and to make the best of it. And so that that sort of played well into my personality. I think, you know, I think the um the big thing for for care partner, you know, for for my role is making choices. You know, it's sort of how do you create a balance to be there for the person you love, not give up so much of who you are and what you love to live in resentment. Because then you become a bad care partner because, you know, no relationship survives resentment very long, very well. And so it really was that. I mean, I think a probably the most extreme example is when Deb first decided to write a book. I was about seven years into building a nonprofit that I cared deeply about. And I wasn't willing to give that up. I knew that if I did, it would have been a problem. So we found, I helped with the first edition of the book, but wasn't willing to kind of give it the full-time effort. I did it nights and weekends, but we found other help to make that book writing process helpful. And, you know, I I think you may know that sort of it ended up being our oldest son, who was the named call of the first book. Um, he played a big role. He was between jobs and played a big role in in the final stages of that book. Um, but then when the book came out and we decided to start Stroke Onward, at that point, I kind of was at a place in my career and saw the opportunity with Stroke Onward and our complementary skills that at that point I was willing to step out of a leadership position at that organization, hand it to others and come back in. So I think, you know, for me, a big part. Um, I had I had people close to me give me good advice at the very beginning, which is, you know, Steve, if you don't stay healthy physically and emotionally, yeah, you gotta take care of you. You can't be any help. And so um, I think it's just always, you know, and and that's a struggle. Finding the right balance is a struggle we still have today, 15 years later. You know, Deb was an awesome skier, racer, better skier than I am. We both loved skiing. We lived a lot of our life with our kids. It was like our our family passion. And now, through a combination of the stroke, Deb did get back on skis, um, but then broke her hip. And the risk of skiing, she's given up skiing. So do I give it up? Every time I go skiing without her, it's painful. I mean, I know it's painful, and yet she knows that there really isn't a reason I can't take five or ten days a year and do something that I love. And so striking that balance is hard. And, you know, we go through our moments around stuff like that. But that's one of the reasons you mentioned um tandem and cycling. That's one of the reasons cycling hasn't become such a big part of our life post-stroke. We were both bicycle riders, but now ride a tandem because it's something we both love to do and can still do together. Um, so though it's choices that that we try to make.
SPEAKER_00:And you you so deeply care about each other and what each other thinks. You know, it sounds like even though you're moving on in some respects, it's also you're you are doing it together, but it's also painful as you try to make these decisions. I mean, I that that is really beautiful how you do everything. I mean, it's just such an example of what a husband and wife should be. Sometimes, yeah, yeah. Well, you're allowed to have your problems. Like anybody in in relationship, especially in spousal relationships. Um, I wanted to talk about the book, and part of your book does include your story, but it also includes others, as you mentioned earlier. There are a lot of other people's stories in there from a a really young person all the way. I mean, there are so many walks of life represented here. What were some of the biggest takeaways as you share other people's stories whose bodies were also very affected unexpectedly and abruptly?
SPEAKER_01:I I have really a lot of takeaways. 15 years later, I am still uh getting better. And I am the phases is so di difficult. Yeah.
SPEAKER_04:Yeah. I mean, I I I think uh a big part of it is we we quote somebody we heard say this once. Um, when you've met one stroke survivor, well, you've met one stroke survivor. Because of those issues of the damage being a little bit different for everyone, um everybody's journey is different. And I think really two things that were universally true of everybody we interviewed for the book. One was people who keep working at it keep getting there was this trope in the medical profession that most of the recovery happens in the first six to twelve months. And while it is true that most of the, you know, the fastest improvement is in early on, it keeps going. And Deb's 15 years later and still getting better. Um, we we literally we went with a walk with friends just the other day, and they said, Oh my god, Deb, your gate is so much better than it was when I saw you three months ago. Um and then the second is that everybody goes through this emotional that recovery isn't just rehabilitation. It's the emotional journey, it's the rebuilding of identity, it's the rebuilding of life, and that that's true for everyone we talk to, and nobody gets help with it. And that really was the genesis of starting stroke onward.
SPEAKER_01:And it the the families, the the the emotion uh and uh friends and families and care partners, the the book is stroke is a family illness, yeah.
SPEAKER_04:Just that that it it it really does impact all the people close to a survivor, not just the survivor. And and I think one of the things that that you know we talk about a lot is that is that it doesn't just impact our lives, it impacts our identities too. Yeah, you know, we become different people because of the experience.
SPEAKER_00:Yeah, I mean, you just touched on one little the skiing, you know, but I would imagine that that's just a small part of your life that you had to change. Yeah. Everything, you know, you did talk about grief earlier, and you mentioned about it's cycles of grief, not just something that you go through the stages and then it's over. It just keeps hitting you in different ways. Could you talk about those cycles and how they show up and how you've learned to move through them more with grace?
SPEAKER_01:I am still learning. My grandson is born, and I am so happy, and I I am so uh uh sad. It's it's it's yeah. Yes, and I it's really the the the grief is the so yeah.
SPEAKER_04:I mean the challenge that we've sort of discovered is that it's very often in the happiest moments when grief comes pouring back in. So, like Deb said, when when our grandson Nylan was born 15 months ago, that was just pure chip.
SPEAKER_03:Yeah.
SPEAKER_04:And then the next morning, Deb was ready to take my head off at every turn. She was so frustrated because she was thinking about all the ways she couldn't be the grandmother that she had always envisioned being, you know, putting them to ski, putting him to sail, things that she probably won't be able to do.
SPEAKER_01:And the the same diaper.
SPEAKER_04:Yeah, just you know, we're there trying to be helpful to our son and daughter-in-law, and there are so many ways Deb can't be helpful just because she only has use of one arm. And so what's safe, what's not safe. And so, you know, here in the happiest of moments, the grief comes pouring back in. And how do you acknowledge it, that promotion again? How do you acknowledge it, give it space, but then get past it by refocusing back on what's wonderful in the moment? And you know, you you can't avoid that grief because if you tried to, it would mean avoiding all these really happy things, and that that wouldn't be a good way to live your life. So it really is how do you refocus yourself, acknowledge it, say, yep, it sucks, maybe have a little pity party, find somebody you can you can vent with for a few minutes, but then refocus back on. But isn't it wonderful that we here in New York with our brand new grandson and you know, and and all the wonderful aspects of it. So that's that happens all the time. And and that's what we we sort of dubbed cycles of grief. Uh-huh. As as a it's just gonna be part of life for forever.
SPEAKER_00:I love how you allow yourself to do that cycle though. Yeah, you don't ignore it, you know, you go through. And that is really the only way to get to the other side and to grow from each time that cycle hits.
SPEAKER_01:Yeah.
SPEAKER_00:Yeah. Speaking about cycling, um, you you like you said, and you went 4,500 miles across the country together? I mean, together you guys did that for stroke across America. And I mean, that just wasn't just a trip. I mean, that that's a big deal. What inspired you to take that on? And what did you discover about yourselves and the stroke community along the way? And there was a documentary made about it, Stroke Across America on PBS Inclusive Sports.
SPEAKER_01:Yeah, um, the the I really I love the the cycling and the the stroke community is 16 uh community events across the country. It's really a a lot of the work and so many people are craving and and recovering.
SPEAKER_04:I mean, it was, you know, we probably we hosted these 16 events, we probably interacted with a thousand or more people, mostly survivors and their families. And and it just it just reinforced our belief that this issue of rebuilding identity and the emotional journey in recovery is important and often overlooked. And then just just how inspiring people are who have kind of like us, sort of figured figured out this path on their own, and many of whom are doing incredible things, it sort of increased our resolve. You know, we had founded Stroke Onward in 2019, but you know, thought we'd keep it a pretty small thing. Um, and it it really made us think that this needs to be bigger. There's more work to be done and let us let us to recruit, you know, given our age and becoming grandparents and wanting to slow down a little bit. Um, we knew that, you know, trying to really build a nonprofit is a is a boatload of work, and we were probably a little too old to take that on directly. And so um, shortly after the trip, we recruited an experienced nonprofit CEO who's now leading Stroke Onward so that hopefully we can do more, build it into something bigger and and make more of a difference.
SPEAKER_00:Yeah. I want to talk about Stroke Onward, but before we do that, I just want to like, what was your map across America? I mean, like, what did you do? How did and did you just like make stops along the way and meet people in the stroke community along the way?
SPEAKER_01:And the the 15 events uh across this country is the uh sh we are the not moving.
SPEAKER_04:So, oh, rest days, um yeah, which we started to call stress days. Um the uh no, so the trip was all planned out. Yeah. I mean, because we were organizing these events, we had to know when we were gonna be in a place at a given time. So we had a, you know, we had a reschedule. We hired somebody who is an experienced bike trip organizer and tour guide. We had a support vehicle. Um, we ended up inviting two other survivors, one stroke survivor, one brain injury survivor to ride with us. Uh and then uh we ended up with two college student summaries with us as well. So there was sort of a core group of six that pretty much rode all the way. We always had a support driver, and we spent most nights in campgrounds. Our support vehicle was an RV. Um, we kind of wanted to be a little more comfortable. So we we got to sleep in the RV. We stayed in in motels every once in a while, um, kind of when we needed to do laundry and and there wasn't a good campground nearby. But that was all planned out in advance by somebody who had the job of making sure all that worked. He and I kind of did the route together, but then it was his his job. And then he hired for part of the time, he was the support driver. And then at other times he had staff. He and his wife run a small bicycle tripping company. So um um it was it was very planned out and it was it was spectacular. Riding cross country was something on my bucket list since my one of my best friends from college did it two years after we graduated. And so, you know, it was it was something we could do that was something we wanted to do personally, but then we could turn it into something to really help raise awareness and and give the stroke onward organization a boost in its visibility.
SPEAKER_01:And yeah, um so it rained a lot. Really rained a rough one.
SPEAKER_00:But you just kept biking, huh? Yeah, yeah, yeah. You know, you you mentioned earlier, and I think that this is all part of stroke onward. So I would like you to talk about all of this, is that you talk about how stroke recovery, like you mentioned, isn't just medical. I mean, it's emotional, spiritual, relational, and the system focuses on physical recovery, but not on rebuilding identity and everything that goes into this. Why do you think that that's been overlooked? And how can we change that? Is that, I mean, is is stroke onward trying to change that?
SPEAKER_01:Yes, yeah, yeah.
SPEAKER_04:Yeah. I mean, I think the why, you know, this is just a hypothesis, but you know, one, there's just not enough mental health support and emotional health support in our country, period. Um, and it's often got stigma attached to it. People people brag about going to the gym to work out to preventatively help their physical health, but you don't hear people you don't hear people bragging about the wonderful counselor they have to just check in and that that seems to be changing a little bit.
SPEAKER_00:That's interesting.
SPEAKER_04:Um, yeah the other thing is that that stroke grew up in the critical care silos of our medical system because it starts as a critical intervention.
SPEAKER_01:Yeah.
SPEAKER_04:And then it for everyone becomes a rehabilitative intervention. And by the time you know we tell the story that Deb, for three and a half years, Deb was just a hundred percent all about rehab to get back to who she was. And physical therapist that heard our very first book talk said, Hey, Deb, if I had tried to talk to you about what you wrote about and talk about when we were working together a year and a half after your stroke, I would have had a black eye, bloody nose, back lip, or all three, because you wouldn't have wanted to about rebuilding a different life or getting your old life back. And so usually by the time people get to the place where they really need that support, they're already disconnected from the medical system. Because unlike other chronic conditions like MS or ALS, stroke isn't a deteriorating condition. Once you bottom out, you're stable. You don't need that constant medical care. So you lose touch with most aspects of the medical system. So that's really what Stroke Onward is all about is trying to figure out what additions or changes to the medical system could help people reconnect with the kinds of support they need when they need it. And one of the challenges is that everybody needs it at a different time.
SPEAKER_03:Yeah.
SPEAKER_04:Some people get to that acceptance point of, okay, my life's going to be different now. What do I do in three months? And some people it's three years, and some people it's 10 years. So how do you connect them at the right time? And that really is what struck onwards working on.
SPEAKER_00:Yeah, you you did mention about how like psychiatrists and psychologists and social workers and those types of people should be involved from the get-go. Yeah, I agree. I mean, you're you're working on your physical self and like you weren't ready for it, but sometimes those things just need to be in place and help you through the journey. And they are there when you want or need them. Yeah, I yeah, I agree.
SPEAKER_04:And of course, you then get into the whole ball of wax of will insurance, if people have insurance, will insurance for it.
SPEAKER_00:Yeah. And and that was another point in your book that awareness runs, you know, um, it's unfortunate that recovery isn't just personal, it's social. And how do we make sure that everyone, regardless of income or zip code, has a fair shot at the whole person recovery. And what do we need to do for health equity?
SPEAKER_04:Equity is so a part of one of the reasons we chose Liz Wilson, our CEO, is because she's sort of lived her life committed to issues of equity. Um, her last big venture was around schools and access to quality education for all kids, no matter their backgrounds. And and um, you know, it's a it's a huge problem in our country and certainly not one that we're gonna solve. But, you know, what we're trying to do is as we think about the changes that we might want to try to catalyze in the healthcare system, that we try to do it in such a way that it's benefiting the broadest possible swath of the population in need. In fact, most notably those who have the fewest resources. Um and there is just there is no easy answer. And, you know, we're not so naive as to think we're gonna fix that whole, that whole problem, but we want to be very conscious of it so that the work we do doesn't just help and improve the people with the best access to medical care and the most resources to self-fund if they need to, um, but rather, you know, focus on how is it most broadly available? Um, everything, all the resources we've currently created and disseminated are all available free to everyone so that at least at that level, cost is not a barrier.
unknown:Yeah.
SPEAKER_00:So people can just contact stroke onward after somebody has a stroke, and then you provide these resources or direct them where they need to be.
SPEAKER_01:And and the the book guide is a phased, social work, uh, or uh the Nicole Professionals.
SPEAKER_04:On our website, um Deb was talking about book discussion guides, and and we've got free downloadable. So for particularly for people with aphasia or speech therapists who might want to do a book group. Um, we've got some materials that make the book more digestible, or even just, you know, good old-fashioned Oprah book group, um, sort of suggested questions to let a broad group of people, even if they aren't directly connected to stroke, think about these issues of identity and rebuilding. Um, we've been told by people who have been part of book groups of a group of people kind of our age who are all contemplating retirement, that it was super helpful to think about these issues in that context. Um, we have a new uh effort that was just launched on World Stroke Day at the end of October called the Onward Community Circle, or we abbreviate it SOC, SOCC, um, not SOCK, but we do have a SOC drawer on the platform. And it's being built to be a robust, interactive platform for survivors, care family members, care partners, uh, medical professionals who are interested in deepening the understanding of these emotional journey issues and helping to sort of build the movement that can drive change. So there are chat rooms and resources and live events uh on this platform called SOC. Um, and so yeah, we're trying to uh get people who care about this and and who need support directly. So stroke survivors who feel alone and disconnected can find community. Yeah. Same for care partners and family members, same for medical professionals who may think, God, our system just doesn't do this well. I wonder if there's anybody thinking about how to do it better. And our hope is to build a very broad coalition of people who can both support each other in an ever-evolving platform that can take shape as the desires kind of reveal themselves, but then also be part of a movement to say, okay, what change can we really work toward to make it to make it better? Um, so that's that's one of Stroke Onward's biggest efforts right now is the launch and building of this platform called called SA.
SPEAKER_00:It is so amazing that again, you are taking your pain and putting it into purpose, and you're creating this website, strokeonward.org. Is that correct?
SPEAKER_04:That's the website. And on the website, there's a link to the the Stroke Onward community circle, um, which is the more interactive piece. We didn't do that through the website, we created a separate platform.
SPEAKER_00:I mean, it's just brilliant. You saw Need and you did it. I mean, I you know, it's it's very, very unfortunate that you had this stroke in your life took this path. But what is amazing about it is that you took it and one of the most profound things in your book, I just I loved it because I love when people turn things into something when they went through something horrific. We always talk about pain into purpose on the podcast, and it always circles back, like we said earlier, to perspective, and you've turned this experience into purpose for sure. Instead of recreating a lesser version of your old life, you've integrated your new identity with your old one, and you said by embracing my stroke as part of my identity, I can now explore and teach in new ways. Yeah, yeah. That was so profound to me. I just sat in that for a while because you know, you figured it out. You're teaching in new ways. I mean, talk a little bit about the process that brought you there that and how you got here in ways that you never expected. Yeah.
SPEAKER_04:I think I think when we first started, when the book first came out, or even while we were still writing the book, um the aphasia community and the professionals, the incredible, wonderful professionals, um, speech therapists who focus on on supporting people with aphasia, and many of them are university-based. And so there's tons of great research as well as clinical programs, really kind of because people with aphasia have so much frustration as to how to rebuild their lives, that community really embraced our thinking and our ideas early on and became really important allies and many, many good friends. And and I think, you know, there's no question that when you're faced with a trauma and you're thinking about a transition, get that reinforcement that what you might do would actually be really, really welcomed and appreciated and needed. Um, that helps fuel purpose. Yeah.
SPEAKER_01:And I think for Deb, it's the real a lot of the the phase of classes, the Zoom classes, and really a lot of Zoom classes.
SPEAKER_04:Yeah, I mean, a number of speech therapy professors have built the book into their curriculum, and we often get invitations to come talk to the class, mostly via Zoom, because just practically speaking, and that's unbelievably rewarding to be able to talk to a group of 30 eager budding speech therapists who are going to go out and help people, and now we're able to give them this foundation so that hopefully they do so with the perspective of the broader journey. But and when the book came out and sort of looked at, okay, what next? We recognized that maybe there's an opportunity to do even more that's meaningful. And that led to the the creation of Stroke Onward.
SPEAKER_01:And the the lectures, I am I'd like to teach.
SPEAKER_04:Yeah, one of the things Deb loves most about her work at Stroke Onward is giving talks, where through the challenge of her communication, which obviously is significant, um, she can still bring her unique perspective as an identity scholar, an author, and a person with lived experience of stroke and aphasia to help to help other people understand something that maybe hearing it from an academic, uh a professor in the field today doesn't land as sort of meaningfully as hearing it from somebody with lived experience. Yeah. Right. Right. So, you know, that kind of that kind of lecturing, um, which is very different than a classroom, um, but but that's very rewarding to Deb and incredibly impactful.
SPEAKER_00:Yeah. You often talk about um individuality and meeting everyone where they are in your book. And I say that all the time here. Uh, whether it's for a stroke or trauma or grief or any other kind of loss, every person's recovery is so unique. And the only way to help a person is to meet them where they are. So I thought that I think that that's really amazing. I want to switch gears here, though. I want to ask you about technology. And you've written about technology-driven adaptation, communication aids, and how tools like AI can help survivors rebuild identity and independence. Can you share how that's unfolding and what gives you hope about the future?
SPEAKER_01:Love and labs, the the the company, the Love and Labs.
SPEAKER_04:Um Yeah, I mean, I so I mean, just three examples of the way Deb is using technology, um, both for continued efforts to rehabilitate, to gain more capability, but also to um adapt to what she has. 11 Labs is uh an AI voice company based in London that sort of the leader of creating replicating people's voices. Um and lots of people talk about all the dangers of that because of deep fakes and things like that. Sure. In Deb's case, we were able to load into their software some examples of talks she's given. It's created uh an AI-driven voice that now we can enter a script into the software and it will speak with a voice that isn't exactly Deb's, but it's pretty darn close.
SPEAKER_01:I agree.
SPEAKER_04:Um, and what that's let her do in a few situations where she was giving longer talks to say, gosh, the amount of time I have to spend practicing to be able to give the talk is immense.
SPEAKER_03:Wow.
SPEAKER_04:And it prevents me from doing other things that I enjoy. So we would take little pieces of the talk and put the script into Eleven Labs and let we call Deb's AI voice Debatar. Um and let let Debatar speak for her.
SPEAKER_00:Oh my gosh, that's so cool.
SPEAKER_04:It doesn't replace her voice, but it extends it and it amplifies it.
SPEAKER_01:Um the the 11 labs is the the the impact the uh ALS and Ruster.
SPEAKER_04:Yeah, they have uh they have something they call their impact program, which is to give a million a million people their voices back. And so they're part of nonprofits. We have a partnership with Stroke Onward. Um, if anybody who joins our community circle that has a speech impairment can get a free license of their software through a partnership that we've formed with them, and they've done that with others, and their goal is to provide a million free licenses worldwide to regain their voice. Um, another one that Deb uses is uh something called a neural sleeve, which is like a neoprene sleeve that goes over her leg that has sensors in it and uh-driven brain that knows what her gait is supposed to be like and stimulates the muscles that should be firing that her brain may not be telling to fire. So it's uh it's a uh a rehab tool that Deb is using again, 15 years after her stroke to try to continue to improve her walking capabilities.
SPEAKER_01:And is the three days ago.
SPEAKER_04:Oh yeah. When when I mentioned somebody commented how how much better she was walking, oh yeah, Deb was using this device to um to to to help. And then a third one is a company uh called Microtransponder that has a product called Vivistem that was recently approved by the FDA, um, which is uh um it's an implant. It's kind of like a pacemaker, but instead of hooking it up to the heart, it's hooked up to the vagus nerve. It stimulates the vagus nerve. And they're data that if you do intensive therapy while stimulating the vagus nerve, it improves the brain's ability to rewire itself and learn. So they've got FDA approval to plant the device and then have a regimen, a six-week regimen of intensive physical therapy. And Deb is looking at having that surgery to see if she can regain functional use of her right arm. Um, and so and the the the the tandem, the the the sweat the the Oh, there's another another company and another product, Deb has. Has tried is a company called In Tandem that has um a music. They basically put a sensor on your on your shoe um to to detect the gate rhythm and then it selects music with that gate pace to try to encourage you to walk more consistently at the gate that your mental therapist has said is the best gate for you and your rehab. So I think the idea is that that there's such an overlap because hope is such a powerful thing that while we don't focus on rehabilitation per se, the intersection between these new tech-driven you know, is it a rehab device or is it an adaptive device? That line is blurry. And if it gives people hope that they can continue to live a fuller, better life, then it improves their mental state and their emotions. And that translates into other aspects of their life. So we see a lot of um of great opportunity. Um, you know, and and in fact, we think with Stroke Onward, one of the places is creating partnerships with these kinds of companies to really um help them access the people they're trying to reach and also get input from people with lived experiences to develop and refine these products is a real, a real opportunity for us.
SPEAKER_00:I mean, this is so inspiring to me to hear how innovation and humanity can work together. I mean, you know, you hear so many negative things about AI and different things like that, but this is just, I mean, it can be used for such good.
SPEAKER_03:Yeah.
SPEAKER_00:But you both are living proof that rebuilding identity isn't about going back. It's about growing forward. So as we close, I just want to ask you one more thing because this is who you are. Um, you've said that this journey has been about finding new ways to do the things that matter, to keep meaning, joy, and connection alive, maybe uh laughing deeper and you know, more connection and having more time and those kind of things. After all these years with patience, partnership, and purpose together, what does living in tandem mean to you now?
SPEAKER_01:Stroke onward is really trying to do something something cool.
SPEAKER_00:So you stroke onward is basically living in tandem with people that have had strokes and their families. Yeah.
SPEAKER_04:Yeah, and I think, I mean, I think about it from a relationship perspective, and you know, it's just it's just doing doing the hard work to stay in balance and deal with what sucks and celebrate what's great and do it in a way that ultimately works for both of us. And you know, neither of us feels like a burden and neither of us resents. And see. And it's really no, you know, I mean, I sometimes I say, this has got nothing to do with being stroke survivor and care partner. This is what relationships that's just it's that's all. This maybe got a little bit more difficult because disabilities create an imbalance to what we were used to. And um, and we just we have to lean into that and not let it drive us apart, but find ways to to to work to work on it together. And I guess, you know, the tandem, the tandem example, we gotta we gotta pedal at the same time. If we don't, we don't go anywhere.
SPEAKER_00:Can they uh can people get to your book through your website? Is it everywhere?
SPEAKER_01:I mean, how do they reach you just through strokeonward.org and go to Amazon for your book or the and the the the the Amazon that the the audiobook is out.
SPEAKER_04:Yeah, so and there's a page on our website that has links to four or five major resellers. It's at most of the online some bookstores. Um the audio book is actually being distributed by a really cool startup company called Audio Brerie. Um, it's available at all the major audiobook, you know, places, audible and whatnot, but it's also available at Audiobrerie, um, which is a uh a startup that really celebrates narrators and their role in bringing media out. Um that's great. Well, you can get to all of that from the website um at www.strokeonward.org. Um, and then just look for the book and and it's all there.
SPEAKER_00:Yeah. Well, Deborah Meyerson and Steve Zuckerman, thank you for reminding us that while identity can be shaken, it can also be rebuilt, that love can be redefined, and that even when life changes in ways we never imagined, we can still move forward together. Their book, Identity Theft, Rediscovering Ourselves After Stroke, second edition, is available now. And I encourage every listener to check out Stroke Onward, the nonprofit they co-founded to support stroke survivors and families. This has been Life in Tandem, and I had to name it that because a story of courage, connection, and the endless capacity to begin again. And Deborah, you show us that life is not over after a major event like a stroke. You are not done. You are becoming. Remember, there is purpose in the pain and there is hope in the journey. I am Anne from Real Talk with Tina and Anne, and we will see you next time.
