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Beyond Rehab: The Emotional Journey of Stroke Recovery with Debra Meyerson and Steve Zuckerman
24 Plays17 hours ago
Debra Meyerson was previously a tenured professor at Stanford University, where she studied, wrote, lectured, and taught about diversity, gender, identity, and organizational change. In September 2010, her life and career were derailed by a severe stroke that initially left her paralyzed on the right side, and completely mute. Years of intensive therapy and a relentless work ethic enabled Deb to regain her independence, but she still lives with physical limitations and speech challenges. She wrote Identity Theft: Rediscovering Ourselves After Stroke to help other survivors and those closest to them navigate an emotional journey that she found very difficult—and rewarding.
Steve Zuckerman is Debra’s husband and life partner since 1988, and her care partner since her stroke in 2010. He had a successful first career as a business leader and then launched West Coast operations for Self-Help, a nationally recognized economic justice nonprofit. After co-founding Self-Help Federal Credit Union and serving as president for 12 years, Steve stepped out of his leadership role in 2020 to cofound and build Stroke Onward with Debra – working to catalyze change in the system of stroke care.
- Links: To learn more about some of the things discussed in this podcast, please see the links below: Stroke Onward website: Stroke Onward Identity Theft: Rediscovering Ourselves After Stroke: Identity Theft: Rediscovering Ourselves After Stroke Stroke Onward Community Circle (SOCC): Sign in | Stroke Onward Stroke Onward Gatherings: Stroke Onward | Gatherings WCNY Documentary: Inclusive Sports | Stroke Across America: Trauma, Adaptation, Purpose | PBS
Episode Highlights
• The "Second Trauma": Debra discusses the identity crisis she faced when her university medical leave ended, forcing her to realize she could not return to her life as a tenured Stanford professor.
• Stroke as a Family Illness: The couple shares how trauma shifts family roles, including how their daughter learned that vulnerability is a form of strength rather than weakness.
• Toxic Positivity vs. Action: Steve and Debra explain why "sugary positivity" can be harmful and how practical help—like a friend volunteering to walk their dog—offers true support.
• Rehabilitation vs. Recovery: Steve highlights the gap in the medical system between physical rehabilitation (fixing function) and emotional recovery (rebuilding a rewarding life).
• Combatting Isolation: The hosts discuss their cross-country cycling trip, where they connected with some of the 7 million U.S. stroke survivors who often feel deeply isolated.
• New Tools for Aphasia: The discussion covers the second edition of their book, Identity Theft, which explores how AI voice technology can assist survivors.
Contact Kendra Rinaldi if you'd like more information about coaching with her, having her as a guest speaker or being a guest the podcast. https://www.griefgratitudeandthegrayinbetween.com/
Recommended
Transcript
Deb's Life-Altering Stroke
00:00:00
Speaker
We had two kids off to college and and one still in high school at home. And for no apparent reason, at 53, healthy, fit, athletic, had a severe stroke. um And, you know, it it stopped us in our tracks. You know, we both are kind of optimists and Hard work and determination tends to to fix things. So for three years, that was Deb's life, was being the most, as many therapists called her, the most energetic and persistent patient they had ever had.
00:00:44
Speaker
Welcome to Grief, Gratitude, and the Gray-in-Between podcast. I'm your host, Kendra Rinaldi. This is a space to explore the full spectrum of grief, from the kind that comes with death to the kind that shows up in life's many transitions.
00:01:01
Speaker
Through stories and conversations, we remind each other that we're not alone. Your journey matters, and here we're figuring it out together. Let's dive right in to today's episode.
00:01:20
Speaker
Let's start with a quick disclaimer. This podcast includes personal stories and perspectives on topics like grief, health, and mental wellness. The views expressed by guests are their own and may reflect individual experiences that are not meant as medical advice.
00:01:38
Speaker
As the host, I hold space for diverse voices, but that does not mean I endorse every viewpoint shared. Please listen with care and take what resonates with you.
Introduction to Deb and Steve's Journey
00:01:49
Speaker
Today on the podcast, I have not one, but two guests. I have Debra Mayerson and her husband, Steve Zuckerman.
00:02:01
Speaker
Debra is a former Stanford professor. She wrote a book in 2019 titled Identity Theft, Rediscovering Ourselves After Stroke.
00:02:11
Speaker
And now she co-authored with her husband the husband, Steve, a second edition of Identity Theft. And it launched this year. So looking forward to chatting and also talking about the nonprofit organization that they have called Stroke Onward as well and finding out about their journey. So I'm looking forward to getting to know you both. So thank you for being here. Thank you. Thanks so much for having us.
00:02:46
Speaker
Thank you. So let's start with your journey.
Identity Crisis Post-Stroke
00:02:52
Speaker
What happened in 2010 that that led to now your your stroke, Deborah, and then the impact it had on your lives?
00:03:09
Speaker
You want me to help? Yeah. Yeah. So, ah you know, in 2010, life was great. Deb was three years into a new tenured position at no more than that, seven years into a new tenured position at Stanford.
00:03:26
Speaker
I was working, building a nonprofit in economic justice. Our three kids, Danny, Adam and Sarah, were doing great. It was kind of life was was humming. Yeah. um our our we had two kids off to college and and one still in high school at home and for no apparent reason deb at 53 healthy fit athletic had a severe stroke um and you know it it stopped us in our tracks um know we we we both are kind of optimists and
00:04:04
Speaker
hard work and determination tends to to fix things. um So for three years, that was Deb's life, was being the most, as many therapists called her, the most energetic and persistent patient they had ever had, thinking that with access to good care and enough hard work that we would get back to life as we knew it. But um health health had other plans for us Yes. and we
00:04:34
Speaker
I had three years after my stroke, the dean out of the ed school had other plans.
00:04:48
Speaker
hads ah plans though that the I love the thing that I, that the medical leave is up and the, I am i am so searching to for the next,
00:05:15
Speaker
a
00:05:17
Speaker
searching for the next challenge.
Family Dynamics and Adjustment
00:05:22
Speaker
Yeah, I think it just, as much as the dean wanted to extend Deb's medical leave, school policy wouldn't allow, and she had to give up her position. And that really, you know, we sometimes refer to that conversation as the second trauma, because when we had to face the reality that this wasn't something we'd be able to push through and get back to life as we knew it,
00:05:49
Speaker
um And it triggered what what we have come to call Deb's identity crisis. You know, who am I now? um And Deb, being Deb, didn't just lay down. She said, well, if they tell me I can't be a tenured professor at Stanford, I still feel like an academic.
00:06:09
Speaker
Aphasia or no aphasia, I'm going to write a book, damn it. Yeah. and And that ended up being ah a five-year writing process and a real learning journey for us about kind of the whole idea that after a trauma-like stroke that creates life-changing disabilities, you really have to remake yourselves. You need to reclaim your identity, rebuild your identity if you want to have a rewarding life. and And that was kind of our five-year journey in the book writing process.
00:06:43
Speaker
in the first book. Well, when you said that, that aspect of not only the identity, of course, yes, here you are a professor, and then you do not have that identity, which you had been there for how many years at that point?
00:06:58
Speaker
Deb, how many years had you been? 22. 22.
00:07:04
Speaker
22 years, 25 by the time. You've been in academic positions for 25 years. Yes. Wow. So for 25 years, that had been your life. And then all of a sudden that's gone. And a lot of times something that we don't even realize is that grief that there is in these changes of identity and identity being a huge part in different chapters in our lives when we go through different life transitions. Like even when we become parents, there's an identity shift there, right? That's even there, there can be some grief. In this case, when people also go into retirement, they also sometimes go through an identity change there and grief there. And in your case, this happened earlier on than what you would have wished of not having then
00:07:54
Speaker
this job that really defined a lot of who you were. I love that you took the bull through the on the horn. How do you say that term? that I'm really bad with by horns. buy the horns with With Spanish, I end up sometimes using those like words, that kind of the tie, not the right. I don't say the the the littles little sayings properly. but you took the bull by the horns and you decided to continue doing what you loved in the way that you could now and adapting to that.
00:08:29
Speaker
And you had the support of your husband. And then I want to hear how was it then also for the kids adapting to this new change? And, and then, yeah, how, how did you all kind of adapt to the new roles you were all now playing? The, the, the,
00:08:49
Speaker
five five that it's I
00:08:55
Speaker
I am so frustrated even though good.
00:09:07
Speaker
in fifteen years since my show um the kids are really good my um one of the the One of the problems, i we we are grandparents, the one year old. And two the heads are married
00:09:42
Speaker
we have that two of ts are married And one is not decades, sort of.
00:09:54
Speaker
Close. Yeah, yeah. and ah we had really a lot of, since my soak 15 years ago, it's so
00:10:10
Speaker
yeah interesting. In the one that my, daughter is a high school sophomore and the the other two kids are in college.
00:10:33
Speaker
You want me to jump in? Yeah. Yeah. I mean, I think one of the chapters in the book is is stroke as a family illness. And we talk about the fact that it impacts everyone. But I think the thing that we really learned even more is it doesn't just impact their lives and our relationships, it impacts their identity too. yeah And that everyone has this identity shift. and I mean, we could do a week's worth of podcast with you to talk about all the stories that they tell and we tell, um super quick on, on each kid.
00:11:10
Speaker
Um, please, I want, I want to hear, cause I'm really curious. Cause yes, like, cause no longer and now they are also caretakers. It shifts the role of the child now as a caretaker rather than the mother, right? Being the mother. So I do, I really do want to hear about that.
00:11:26
Speaker
The two, uh, weeks ago. Yeah. So one of, one of, through our nonprofit, one of our kind of signature programs is something we called stroke monologues, which I think of as kind of TEDx for stroke survivors and their families and medical professionals.
00:11:45
Speaker
And we held a couple of performances in the Bay area two weeks ago and Deb gave a monologue and, and talked specifically about that, the changing role of a parent and particularly with her disability of aphasia, the sense frequently that she can't be the parent that she wants to be. And yet, if you think about parenting differently around the disabilities you have,
00:12:17
Speaker
you still can parent very effectively. And so it's not an identity that she needs to lose. It's an identity she needs to rebuild in a slightly different way. And Adam, our middle son, also gave a a monologue at this event.
00:12:35
Speaker
And he talked about his experience of, at times, because of impatience and frustration and Deb's speech,
00:12:47
Speaker
not including Deb in a conversation that he might've included her in before but then realizing how that was his loss and he needed to change how he interacted with Deb in order to give her the appropriate space to be able to be the mother that he still really wants and and needs.
00:13:12
Speaker
And so it was sort of both sides of of that changing relationship.
Support and Personal Growth
00:13:19
Speaker
And you know, Sarah, um in the book, in that in that chapter on family, Sarah was a ah sophomore in high school when Deb had her stroke. And in her senior year, she gave a talk to her entire small school community about her experience and how really it changed her understanding of what it means to be strong.
00:13:48
Speaker
that she kind of was like her mom, tough as nails, fully independent, no, I don't need help. But then because she started seeing her mom out of necessity, letting people in and letting them help her and showing her vulnerability, because shortly after the stroke, Deb didn't have a choice.
00:14:11
Speaker
that Sarah started to allow her friends in and share what she was going through and the strength she got from that. And so here, two years after the stroke for a 17 year old woman, she kind of went through a learning process that she probably never would have gone through. So we kind of hate the expressions, silver linings, but and you do try to find like, where are the good things that happen out of an unequivocally bad situation.
00:14:47
Speaker
And might Sarah have achieved that personal growth at some point in her life? Maybe, but not at 17. um yeah So, you know, the the relationships change in in difficult, but also sometimes very rewarding ways.
00:15:05
Speaker
i I could, as you see, I'm like tearing up hearing all this is just so moving and just everything that you said regarding with, for example, with Sarah, with learning that strength doesn't come from not needing or asking for help, that strength, that there is strength and vulnerability. Like there's, I think a Brené Brown book, I think is called something like that.
00:15:28
Speaker
um And really that, yeah, it is vulnerability doesn't mean weakness, right? It's like to be able to be vulnerable and and know when when you need help and asking for help is, strong you know, there is strength in that.
00:15:44
Speaker
And yes, the the silver linings component... I think that when when people in the midst of the grief say something to somebody like, well, at least X, Y, i this you know this, you know, this could have happened, then that doesn't feel that good. But when you see it in hindsight, like what you just did right now of the people that your children are now, the adults that they are now, because ah so they did, their life experience did lead them to
00:16:16
Speaker
maybe see life differently, right? Because of what happened and do you grow and, and mold yourself around those things. You always have a choice as a human being of what you do with circumstances in your life, right? And they chose to take these moments as opportunities of growth and,
00:16:36
Speaker
Yes, we don't we don't know who we would have been in any of our lives, right, had things not happened. But it is what is present to you guys now, your organization, to the books that you're doing, are all these gifts per se that came out of something so hard and challenging challenging. And it's just ah beautiful to see that is like that it happened, not just for you guys as a couple, that you are just together, but as a family. It's just very inspiring. So thank you. Thank you.
00:17:08
Speaker
Yeah, and I think what you said is really important, that that as a survivor or a family member or a care partner, giving yourself the space to look back and see that there are good things, not that you're glad it happened, but that there are good things and embracing those is so different than, you know, one of the things we've really tried to learn from the people around us who have been particularly effective at supporting us is what does really good support look like? Yeah. um And often,
00:17:45
Speaker
or almost always, it is not that sugary positivity. In fact, we've embraced a phrase because i I can be, not in that way, but just I can suffer from something that we now call toxic positivity. Yeah, like yeah being optimistic and being positive in general as a worldview is a pretty good thing.
00:18:11
Speaker
but not in every moment. And when somebody is really struggling and somebody is really grieving, trying to positive them out of it is usually a bad idea. Yeah. i So.
00:18:25
Speaker
Yes. Thank you. Debra, share with us, what were some of these ah ways in which your friends supported you in a way that was not this toxic positivity? Can you share an anecdote that you remember of one of your friends of how they were there with you with just as who you are and honoring that journey and the hardship of it?
00:18:47
Speaker
The, um, Cam, the, the, ah um eight months ago the so yeah eight months after my stroke Kim this flew down to Palm Springs to Ann's birthday party the
00:19:18
Speaker
it ends ah birthday party And is the Kim helped me it's cut in contact, ah the really lot.
00:19:38
Speaker
that We, really a lot. Want me to help? Yeah. Yeah. So I think the story is in the book. um But one of Deb's lady friends, girlfriends, was turning 50 and they were doing a trip down to Palm Springs and urged Deb to come. And Deb was like, no, I'll be too much trouble. It'll be too hard. It'll be too frustrating.
00:20:04
Speaker
And this really close friend, Kim, basically just said, Deb, you need to live I will be with you side by side. And Deb, of course, said, yeah, but then you won't have any fun. And Kim said, I don't care.
00:20:19
Speaker
i want to do this for you. So she was just 100%. I'm here to support you so you can do whatever you can do and and not whatever you can't do.
00:20:29
Speaker
And and sort of. very strongly convinced Deb that she should go. And it was sort of a it was sort of a turning point for Deb. It was about eight months, I think, after the stroke, for Deb to get out away from me, away from family, um with friends, yeah and allow a friend to really be there for her in an unambiguously supportive way.
00:20:57
Speaker
and And not saying, oh, Deb, it'll be just like it used to be. No, it's going to be different. yeah But that's good. That's okay. And I and danced.
00:21:11
Speaker
Yeah. that I danced a lot. And it so it was sort of yeah kind of one of the first really moments of of joy in a would have been a really shitty eight months. yeah So amazing. Yeah. So net because now the way that you have to express yourself is has shifted and changed. So do you feel you just said you danced a lot that time? Do you feel that now you're
00:21:42
Speaker
just like what you do and how you express yourself since it's harder for you to be able to, let's say talk right away over like a joke or something like that in the scenario. When you're interacting with others, what is the way that you kind of show that you are engaged in that in that conversation or in that moment? Like what what has changed with that? Yeah.
00:22:09
Speaker
A lot. Let me talk. Yes. It's so difficult and frustrating and frustrating. It's and and days that and and fascinatings it's it's once a or two times a day.
00:22:45
Speaker
So frustrating. Yeah. Two times a minute. Yeah. Yeah. I, you know I think, I think your, your question about how did people support us? Well, one other story, um, uh, another very, very close friend of ours, Karen, um,
00:23:05
Speaker
right after Deb's stroke, when she was still in the hospital, life was completely discombobulated. And we were lucky that bunch of friends organized a meal brigade and you know did a lot of the things that when you have a good community often happen. And it was great. It was wonderful.
00:23:23
Speaker
And I got an email from Karen who said, hey, and I tear up when I tell this story. She said, hey, I know you and Deb both used to run with your dog pretty much every day.
00:23:38
Speaker
So you may be worried that she's not getting exercise. So unless you tell me not to, going to just swing by and pick her up when I take my dog for a walk so you don't have to worry about it.
00:23:49
Speaker
And I had this unbelievable sense of relief to something I didn't even know I was worried about. and And that sort of second order Like what could people be bothered by that's not on the surface and other people aren't going to think about was like, it has changed the way, like whenever somebody I know now,
00:24:17
Speaker
gets into trouble, health or otherwise, I remember how that felt for me. And I try to say, okay, what's, what's, what's the equivalent of walking our dog for them?
00:24:30
Speaker
And yeah, and half the time I can't come up with something, but just, so I tell that story because it it's such an unusually deep kind of support. Um, and I see you tearing up too. and i I am because there's just so many casseroles you can have in your fridge. Right. And so it's, you know, people might bring food and that may be the, really the only thing that usually we think of in these situations. Um, And there are these other ways, like you said, walking the dog or some, there was a lady that one time said that somebody just started planting, her daughter had died and they planted all these, like without her knowing, started plant planting flowers in her flower bed. Her daughter's name was Dahlia. And so they started planting Dalias in the front of her yard, like things like that, or picking up, you know, doing the laundry or I don't know, things that are,
00:25:24
Speaker
that we don't think of sometimes so and that we could think they are intrusive, but they really are not. They really are thinking beyond the surface level, like you said, of of what can be done in these situations. And that is just, that is beautiful. And because I have two dogs, so of course you're talking about somebody walking your dogs and that the dog was probably also grieving like My life has also changed. i don't get my daily walks anymore. I just had to come on and just kind of interrupt right now this episode that you're hearing. Thank you so much. I'm so grateful that you guys are listening to this conversation. And every single time i hear a guest, there's something new that I learn and something else that ends up showing up within me that I realize I still have to work on.
00:26:18
Speaker
And if by chance, as you're listening to this conversation, you're feeling the same, that there's parts of you that are being stirred up and you are navigating a life transition right now that feels just heavy and stressful and just layered with grief. I want you to know that you do not have to do it alone.
00:26:36
Speaker
I invite you to connect with me for a free 15 minute discovery call and we'll explore what's coming up for you and see if working together feels like the right fit.
00:26:47
Speaker
Just check the show notes below for my email and reach out for details. I'd really love to support you in integrating these transitions with more ease and clarity.
00:27:00
Speaker
Can't wait to hear back from you. Okay, let's keep on listening to the episode. So it's been 15 years pretty much. So what has it been then now and how long into Debra, into your ah accident, into your stroke accident, into your stroke, did you guys develop the nonprofit?
Founding Stroke Onward
00:27:20
Speaker
And you already had experience with nonprofits as you, as you we mentioned the beginning. So how did you start stroke onward?
00:27:29
Speaker
Um, uh, eight years ago. Six. Yeah. Oh, no. It was right when the book came out. So, so, you know, as we, uh, eight years ago,
00:27:45
Speaker
No, nine. 2019 and it's 2025. So that's six, I think. Arithmetic. We argue about arithmetic. um But basically when we were nearing the book's publication date in 2019, we realized we had struck a chord that Deb being able to turn her academic expertise around identity on herself and realize how important identity was in recovering from something like stroke.
00:28:24
Speaker
And that we didn't see that any place in all of the recovery journey we had had Other people weren't talking about it. um And as we talked to more and more people, it was it was resonating. People were saying, oh my gosh, I felt that way, but nobody's put words to it. And and so we, you know like you said, I did have a background in nonprofits and and all of a sudden it just sort of felt like this is an obvious combination of Deb's academic expertise and the book she she led the authorship of
00:29:01
Speaker
our respective lived experience as a survivor and a care partner and some background in nonprofits. So like the idea of starting something wasn't intimidating, knew how to do that, that we just sort of thought we should do something. And and candidly, when we first launched it we had pretty modest ideas, you know, that it would just sort of be a vehicle through which we could do speaking and do a little bit more work and advance the book.
00:29:32
Speaker
um But being two type A personalities over the years, our aspirations, we we keep growing what we think the organization can do, but not necessarily growing how hard we want to work. But With a grand first grandkid, we're sort of going the other way. So now we have hired an experienced CEO who's led nonpro built and led nonprofits before and you know a small but but mighty team. And basically, we're now really in the process of trying to say, how can we attract more resources so that we can keep growing this effort and make more impact? Because there really is a void in the medical system
00:30:17
Speaker
around this emotional journey in recovery, in stroke. i Interestingly, other um chronic conditions, things that are chronic conditions from the beginning, like ALS and MS, often have more ongoing support for them.
00:30:36
Speaker
But with stroke, Because once you bottom out and then you start to recover, you really don't have medical issues anymore that require you to stay connected to the medical system.
Challenges and Community Support
00:30:47
Speaker
And yet, for the overwhelming majority of stroke survivors, you have disabilities that are chronic conditions that you will live with for the rest of your life. And so that whole idea of of how can we influence the medical system to better support stroke survivors and their families on the emotional journey,
00:31:08
Speaker
for the rest of their lives, because they have this chronic condition that they need to live with. and And one of the complexities is it's a different chronic condition for everyone. For Deb, she has some physical disabilities, but the most life-changing piece of her stroke is the aphasia. yeah For others, they may speak fine, um but be in a wheelchair.
00:31:30
Speaker
For you know one of the women who gave a talk, at our recent monologue has locked in syndrome. She can't move from, you know, the neck down, can't speak at all and has to use ah eye blinks.
00:31:46
Speaker
You know her cognition is there. And so with her aids, she uses blinks of the eye to tell the aid what letters are the right letters to spell out what she wants to say.
00:31:57
Speaker
you talk about a laborious process and yet she's written seven books. seven short, short books about her stroke recovery experience. And she wrote a script, which she then used a recorded voice to speak for her in our monologue, just unbelievably powerful.
00:32:18
Speaker
um So that's, you know, that's the kind of work we want to do. It's so amazing. Now, is it nationwide? Is it just, year is it localized? You guys are in California, is that correct?
00:32:31
Speaker
Yes. But yes it's national. Our staff is virtual all over the country. i mean, staff, four people. And our biggest effort right now is building an online community that we call the Stroke Onward Community Circle to try to create a place where survivors, their families, and medical professionals can interact, find community, share ideas,
00:32:59
Speaker
all around this notion of the emotional journey in recovery. um And then we do events from time to time in different places around the country. that but The and a national Yeah. We definitely will even be, yeah. The the part of community, the role that community plays in grief in grief and this type of grief is huge, right? As you guys experience yourself with your friends. So the fact that you are now also building community with other people, or at least these people can also find community of others that they can relate to. Because it is sometimes when you do not have someone else that's going through something
00:33:50
Speaker
similar, like you feel so alone. So how has it been for you guys as a couple, whoever whichever one of you wants to speak in terms of relating with others that are going through the same similar um journey and how has that impacted and supported your own journey?
00:34:14
Speaker
um I don't, the aphasia is really difficult. And I don't, that Michael and I, am lucky to have friends and partners and family the i am lucky to have it friendss and partners and family to the
00:34:46
Speaker
ah the don't say ah Can I jump in? yes or go nago
00:35:01
Speaker
just deb deb a lot of people really, really fine. One, a lot of people isolate themselves after stroke, and that means you lose community.
00:35:13
Speaker
And for a lot of people, finding a community of stroke survivors is really important. Yeah, I agree. But that really wasn't Deb's journey. She did find some community basically through the physical therapy she was doing, yeah where she met other people working in the same physical therapy venue.
00:35:35
Speaker
um But then i think your biggest investment in getting to know others was when you were writing the book and you interviewed 25 other survivors and so got to hear people's stories.
00:35:49
Speaker
And then rolling that forward um in 2022, we actually, so bicycle riding has been one of our biggest forms of activity.
00:36:04
Speaker
Deb can't ride a single bike anymore. we were big cyclists before the stroke. Deb can't ride a single bike. we've had a couple of different tandems that we've adapted. A bike built for two.
00:36:14
Speaker
What's that song with a bike built? What is that little song? Bicycle built for two. Yes. Do not want me to sing. Um, um, so we ride a ah slightly adapted tandem and two years ago, three years ago, um we actually led a small group across the country. We rode 4,500 miles from,
00:36:37
Speaker
um outside of Portland, Oregon, to Boston, Massachusetts. And um we hosted 16 community events along the way to raise awareness for stroke and for aphasia.
00:36:51
Speaker
And when we talk about that trip, I mean, the cycling was amazing. It was beautiful. We loved it. But the most powerful piece of that trip were those community events and seeing people come together and how many people said, I feel so alone and I didn't know anybody else was. good It's sort of ironic.
00:37:12
Speaker
Seven million people live in the United States having had a stroke, seven million survivors. And yet so many of them say, i feel so alone. I didn't know anybody was going through what I'm going through. And I think that just That speaks volumes of what what's what still needs to be done, like you said, right? It speaks, yeah.
00:37:33
Speaker
And the phases centers across the world are really the discussing the problem.
00:37:49
Speaker
And ah the virtual, it's really hard to... ah ah ah the of rural parts of the country didn't, it's really the the problem.
00:38:09
Speaker
the rural The rural areas are the ones that feel very, yeah. Yeah. And so the fact that you guys were traveling from one coast to the other and stopping in these little towns of people that they probably were the only ones in their little town that had had a a stroke at that moment and feeling so disconnected, you guys could bring this connection throughout as you were and the in this bike tour across. I love that. Now, what was the reasoning behind doing the second edition of this and what what components were added? Because this is then set five years later that you then redo the second
Journey Updates and Insights
00:38:49
Speaker
edition. So what are the differences between the first edition and the second edition? And should people...
00:38:56
Speaker
Read number one and then two, or is two the one that now is the one around? the Two. Second one. Okay. So second edition. Second edition includes most of the first edition. We made a few little minor tweaks, but the big editions were...
00:39:16
Speaker
kind of a ah a preface that in effect took our personal story up to date. um And then two chapters at the end of the book, um one with sort of six or seven insights that we feel like we've learned about this i rebuilding identity, emotional journey um since we wrote the first book.
00:39:42
Speaker
And then a little bit about what we think is needed to create systems change to really help the medical system incorporate this part of recovery. Sometimes we say recovery isn't the same thing as rehabilitation. There is rehabilitation, that's super important.
00:40:02
Speaker
That's getting as much back as you can. but recovery also includes the rebuilding of your identity and a reward you know the best possible life you can live in the face of whatever disabilities you still have.
00:40:15
Speaker
and so yeah It doesn't mean, fake it's not like a fixing component anymore. It's the, how do I live with this as my reality and make it be still fruitful and a life worth living with this reality being, right? Yeah.
00:40:33
Speaker
yeah And the chronics, the book is, it is the chronic so part of the stroke recovery.
00:40:47
Speaker
And the phagia, medical, miracle that though ah mental health is really needed.
00:41:05
Speaker
The, the, uh, um, to um ah three pages of mental health. Yeah, just that that that the mental health professions, whether that be social work or psychology or psychiatry, are just much less present in the stroke recovery realm than in other medical arenas. I mean, they they get involved if somebody's clinically depressed or anxiety disorder. But, you know we talk all the time about just
00:41:42
Speaker
it It is it is a massive emotional, psychological change in your life. Even if you're not clinically depressed,
00:41:55
Speaker
everybody needs some help. Absolutely. And that's not built into the system. It's just shocking. It's shocking because when you've never been in that, like I did not know that this wast that this was the case, that there's not this, you know, psychological support around this and emotional support because does this have I wonder if it happens in so many other things, like if amputees, for example, or things like that and other people that have debilitating things or, you know, like if they also don't get...
00:42:25
Speaker
that emotional and psychological support as well. Wow. Wow. We really do need to reshift the way we do health in, in our society. Yeah.
00:42:37
Speaker
Yeah. It's shocking. And, virtual, the, the ai is so important. yeah It's, uh, we, it's real, uh, three pages of, uh,
00:42:55
Speaker
that that in the book. Oh, so AI is included in the book. the yeah That was definitely not something five years ago when the book came out. ah Yeah. and we We just talk about ways that, you know, a lot of people have a lot of concerns about AI for good reason and and how it's going to shape society, but there are some very concrete ways that Deb is using an AI supported voice replication software to help you know speak for her at times when she doesn't have the time to put in to rehearse for a talk. Or um there are a bunch of new ah therapies, you know therapy technologies that people are finding that use AI
00:43:43
Speaker
around retraining the brain. And, you know, we're, that's a soapbox we get on, which is, you know, Deb's been doing therapy for 15 years and, and is still improving.
Continued Recovery and Advocacy
00:43:54
Speaker
And, um you know, when, when Deb had the stroke 15 years ago, a lot of the medical profession was saying, you know, all the, all the recovery happens in the first six to 12 months after that, you really can't get better. And again, they're confusing recovery with rehab, but
00:44:13
Speaker
um But even with rehab, you know, there are these new technologies, often AI driven, that are finding that, no, yeah. I mean, Deb's exploring one right now that it's called vagus nerve stimulation, where they believe that the brain can relearn better if you're doing therapy while you're having stimulation to a nerve, particularly central nerve in the body.
00:44:42
Speaker
that didn't exist. It's a brand new technology. And so, you know, those are all things that can help people further improve, give them hope. whole yeah And hope is so important. Hope is so important because just is, it's a driving force in your life as well, right? Every day you have hope of, oh one more One more word I'll be able to retrieve faster. One more this, right? There's still, you're holding on to that. And that is something that when you are not given any hope at the beginning of something, it can kind of
00:45:22
Speaker
really affect your process as well, much more than if you are given some hope, that right? It changes it. Thank you both so much. I always like to ask before we wrap up and tell people how they're able to contact you and get the book, is there something I have not asked that you want to make sure to share with the audience?
00:45:48
Speaker
Um, no, I mean, I guess what I would say is is to people in your audience, if you know somebody who's had a stroke or a trauma-like stroke, really try to make space and encourage them to engage, even if it's difficult.
00:46:07
Speaker
And for people who have had a stroke or have a speaking disability of some other kind, it it feels hugely risky to get out there um But you're not only helping yourself by avoiding that isolation, um but you're helping others by by educating them and by sharing sharing your story, which is an important story. And so we really, a lot of our work is around trying to help stroke survivors and their families share their story, because we think that's an important step in the process of creating change.
00:46:48
Speaker
And the stroke circle, no, the stroke, the stroke onward community circle. Yeah. um Yeah. Yeah. Just that, that, you know, if you are interested in this topic, particularly if you are a survivor or a family member or a medical professional that believes the profession needs to provide better emotional support,
00:47:15
Speaker
to stroke survivors, just we encourage you and we'll send you the link for your show notes, but to to join the stroke onward community circle, we call it sock, even though it's a two C's, not a K, but we do have a sock drawer on the site with resources, but we just encourage you to to join the community and and help help support each other and help drive change.
00:47:41
Speaker
Thank you so much for sharing that, Steve. Thank you, Debra, for sharing that. And now how can people get the book? What's the best way of them getting the book? And then of course the, in the links I'll, I'll include then your website as well as stroke on word. The, uh, the Amazon and the, uh, uh, Barnes and Noble and, uh,
00:48:13
Speaker
the ah Well, we have on our website, which is strokeonward.org, there's a section for the book, Identity Theft, and we have links to three or four of the big retailers. It's available at most of them, if not all of them.
00:48:32
Speaker
ah There's also an audio book yeah um with ah an award-winning Julia Whelan, who's an award-winning Are you kidding me? How did I not know this? Do you know she's my favorite? My favorite? Yeah.
00:48:48
Speaker
I got chills. i She's like, i I do a lot of, ah you know, audio books a lot. If I would have known that, I would have heard your book while I was like, I got chills. I love, she's like the best, the best, the best ever. When when we were doing, when we were doing the first edition,
00:49:06
Speaker
ah Deb, when when it was time to think about an audio book, Deb was listening to Educated, narrated by Julia Wheeling. And that book is so good. And she's just amazing. but And and we we actually, turns out, we had a mutual friend who she had narrated for. And we got an introduction. So she did both the first book and the second book.
00:49:30
Speaker
And in fact, you may or may not know, she's started a ah company called Audiobrary. really to promote the art of of narrating. yeah um And she she is, Audiobrary is distributing our audio book. So it's, we have a publisher that's disre distributing the um paperback and the ebook, but Julia's new company, Audiobrary, is the distributor for the audio book.
00:50:04
Speaker
Oh, please send me the link so that I can include that on here as well. because And I want to hear it because, yes, I normally go on on Audible or I go on the in the library and read books that way. yeah and i I love it. And I love that she's doing this and it's so important.
00:50:23
Speaker
Okay, perfect. of Awesome. Yeah, you just send me them and the like send me the let audio. Okay, I am going to check that out.
00:50:34
Speaker
I love that and the the importance that there is to and in supporting these kind of... As we're talking about AI, there's a lot of benefits to AI. And there's also certain things that certain jobs a lot of times have been affected by it. And voiceovers are one of those. So I am so happy that Julia is creating her own company so that she can also support other people that have the the skill of read of doing these these readings for that too. So you saw how excited I got. It was as like like oh my gosh.
00:51:09
Speaker
yeah It's like that is such an amazing, um amazing yeah combination there. So thank you for for sharing that again. Again, to the audience, thank you for listening. we had Steve and Debra and again, all their links will be in the show notes. And for all of you, again, just know that you are not alone. There are people out there that are doing a lot of things that can support you if by chance you are also in this type of journey. So find community and find the support out there to help you with it. So thank you again, Steve and Debra.
00:51:45
Speaker
Thank you. Thank you. Bye.
00:51:51
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief.
00:52:04
Speaker
If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone, please who may need to hear this, please do so.
00:52:20
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me.
00:52:32
Speaker
And thanks once again for tuning in to Grief, Gratitude, and the Gray In Between podcast. Have a beautiful day.