Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really Means
There are stroke stories that arrive like lightning.
And then there are the ones that feel like a quiet, terrifying slide hour by hour until you wake up and everything is different.
For Debra Meyerson (also known as Deborah), that difference had a name: “the slow fall off a cliff.” Her husband Steve describes watching the change unfold overnight in the hospital, neurological tests every hour, skills fading, the unknown getting heavier with each check-in. And the scariest part? Not knowing where the bottom was.
This episode isn’t only about what Debra lost. It’s about what she rebuilt with aphasia, with grief, with a fierce independence that made asking for help its own mountain, and with a new definition of recovery that doesn’t depend on going back in time.
When Stroke Doesn’t “Hit”… It Develops
One of the most jarring elements of Debra’s experience was the way the stroke revealed itself.
Steve shares that Debra left the emergency room still talking, slurring a little, but still planning. Still believing she’d be back teaching soon. Then the overnight monitoring began, and the decline became visible.
From midnight to morning, her movement and speech changed dramatically.
By morning, she couldn’t move her right side. And she couldn’t make a sound.
That’s what makes Debra’s phrase so powerful: it captures the reality many survivors and families live through, watching ability disappear in stages, not all at once. It’s not just a medical event. It’s an emotional one.
And it changes how you experience time. The mind starts bargaining. The heart starts bracing. The body is suddenly not predictable anymore.
The Hidden Clue: Dissection, Headaches, and Near-Misses
Debra’s stroke was ischemic, but the cause wasn’t a typical blood clot. Steve explains that it was due to a dissection, a tear in the inner wall of an artery.
In the months leading up to the stroke, there were warning signs:
- severe headaches
- episodes where she nearly lost consciousness
- a moment where she told their son, “I think I’m having a stroke,” but the symptoms resolved before EMS arrived
Steve describes a likely “opening and closing” pattern of temporary interruptions to blood flow that didn’t show up clearly during exams because, in the moment, she appeared okay.
This is one reason caregivers can feel so haunted after the fact: you did the right things, you sought help, you went to specialists… and the stroke still happened.
That’s not failure. That’s reality.
Aphasia After Stroke: When Words Don’t Do What You Want
Aphasia isn’t one experience. It’s a spectrum, and Debra’s challenge is word-finding, both in speaking and writing.
When Bill asks whether writing is easier than speaking, Debra’s answer is simple and blunt: it’s hard either way.
She also notes that dictation isn’t a shortcut.
What makes Debra’s story especially moving is how Steve describes the long arc of speech returning:
- weeks before she could even form sounds
- a month or two before repeating words
- then, months later, the first original word that made it out unprompted, not as an exercise
It happened during a normal moment at a table with family, searching for the name of the pig from a movie no one could remember.
And Debra suddenly blurted out:
“Babe.”
It might sound small to someone who’s never experienced aphasia. But for anyone who has, or for anyone who’s loved someone through it, that moment is enormous.
It’s proof that the brain is still reaching for language. Proof that the person is still in there, still trying to connect.
And yes, Steve mentions melodic intonation therapy, a method that attempts to engage the brain’s musical/singing pathways to support speech. Debra’s improvement, even years later, is described as gradual marginal gains that add up over time.
The Identity Problem Nobody Prepares You For
When Bill asks what part of her old identity was hardest to let go, Debra points to the heart of it:
- Stanford professor
- athlete
- fiercely independent
- skiing (a love that mattered deeply)
- the ability to do life without needing so much help
This is the part many survivors don’t see coming: you’re not only recovering movement or speech. You’re grieving a version of yourself that once felt automatic.
And that grief can be complicated, because you might still look like you.
Inside, everything is renegotiated.
This is where Debra and Steve offer something that can change the trajectory of recovery: adaptation instead of abandonment.
Debra couldn’t ride a single bike anymore, but they began riding a tandem, and it became the thing they could do together vigorously, something athletic, meaningful, and shared.
Not the same.
But real.
Cycles of Grief: Joy Can Trigger Loss
Debra describes grief as something that shows up constantly, “every day… every hour.”
Steve offers a powerful example: becoming grandparents.
Debra was ecstatic. Over the moon.
And then, the next morning, she was furious, spring-loaded into a bad mood, snapping at everything.
Why?
Because beneath the joy was a private inventory of what she couldn’t do:
- hold the baby safely
- change a diaper
- be alone with their grandson the way she wanted to be
- chase a toddler the way she imagined
This is what “cycles of grief” looks like.
Not sadness replacing joy.
Sadness sitting next to joy.
And if survivors don’t understand that’s normal, they can interpret it as brokenness or failure.
It’s not.
It’s grief doing what grief does: reminding you of what mattered.
The Care Partner Trap: Guilt, Burnout, and the “Fix It” Reflex
Care partners often disappear inside the role. Steve names a different approach, one supported early by friends who told him plainly: if you don’t take care of yourself, you’re no use to Deb.
So he set priorities:
- exercise
- eating well
- sleeping well
He also acknowledges how support made that possible: family help, flexible work, and friends showing up.
Then comes a line that many couples will recognize immediately: toxic positivity.
Steve admits he struggles with sadness; he tends to solve problems, cheer people up, and push toward the bright side. But Debra doesn’t always want to be talked out of it. Sometimes she needs space to grieve without being “fixed.”
That’s the lesson:
Support isn’t always uplifting someone.
Sometimes support is staying present while they feel what they feel.
“True Recovery Is Creating a Life of Meaning”
Debra’s philosophy shows up in the opening of her book and in the arc of this conversation:
“True recovery is creating a life of meaning.”
At first, recovery was about returning to who she used to be, therapy, effort, pushing hard.
Then something shifted: writing a book became a turning point. It helped her stop using her old identity as the measuring stick and start asking a new question:
“How do I rebuild a life I can feel good about with the cards I’ve been dealt?”
That idea is the bridge for so many survivors:
You don’t have to pretend you’re fine.
You don’t have to deny what you lost.
But you also don’t have to wait for a full return to start living again.
Debra Meyerson: Aphasia After Stroke Interview
Debra Meyerson’s “slow fall off a cliff” stroke led to aphasia, grief, and a new definition of recovery: rebuilding identity with meaning.
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Highlights:
00:00 Introduction and Background
06:11 The Experience of a Stroke: A Slow Fall Off a Cliff
22:45 Navigating Caregiving: Balancing Needs and Support
32:01 Understanding Aphasia: A Spectrum of Experiences
43:05 The Importance of Sadness in Healing
50:08 Finding Purpose Through Advocacy
53:31 Building the Stroke Onward Foundation
57:12 Advice for New Stroke Survivors
Transcript:
Introduction and Background – Steve Zuckerman and Debra Meyerson
Bill Gasiamis (00:00)
Welcome to the recovery after stroke podcast. name is Bill. And if you’re a stroke survivor or you love someone who is you’re in the right place before we begin a genuine thank you to my Patreon supporters. After more than 10 years of hosting this show solo, your support helps cover the costs of keeping it online and helps me keep showing up for stroke survivors who need hope and direction. And thank you to everyone who supports the show in the simple ways to YouTube comments, Spotify, Apple reviews.
people who’ve grabbed my book, and even those who stick around and don’t skip the ads. It all matters more than you know. Today you’re going to meet Deborah Meyerson and her husband, Steve Zuckerman. Deborah describes her stroke as a slow fall off a cliff. And that phrase captures something so many stroke survivors experience but struggle to explain. We talk about aphasia after stroke, word finding.
The moment a single word returned and what happens when recovery stops meaning going back and starts meaning rebuilding a life you can actually feel proud of. Deborah and Steve Myerson. Welcome to the podcast.
Debra and Steve (01:08)
Steve Zuckerman That’s okay. I don’t mind being Mr. Meyerson from time to time.
Bill Gasiamis (01:17)
Steve Zuckerman, of course. I mean, I’ve seen it on every email. I’ve seen it on every conversation we’ve had, but that’s okay. I mean, you’ve probably been called worst, Steve.
Debra and Steve (01:29)
Absolutely, much worse.
Bill Gasiamis (01:32)
Debra, before the stroke, how would you have described yourself professionally, socially and personally?
Debra and Steve (01:39)
Outgoing, social, comfortable, no time to to to other’s time. Not taking up other people’s time? Yes. In contrast to me.
Bill Gasiamis (01:59)
Yes, David, you’re very needy.
Debra and Steve (02:02)
Yeah,
and ⁓ yeah, it’s really outgoing.
Bill Gasiamis (02:09)
Outgoing, yeah, fantastic.
Debra and Steve (02:11)
I’ll add, because you didn’t say it, a incredibly hardworking, self-demanding professional for whom good was never good enough. Yeah. Yeah. Yeah. Something like that.
Bill Gasiamis (02:23)
perfectionist.
Fair enough Steve. What roles defined you back then? you’re a partner, you’re a father. How did you go about your day?
Debra and Steve (02:37)
I mean, I think, you know, very similar to Deb, we were both hard driving professionals who had serious careers. We had three kids that we were raising together and both took parenting very seriously. So worked really hard, you know, to not travel at the same time, to be home for dinner, ⁓ to be at sports games. And we were both very athletic. So both things we did together and things we did separately.
I think, you know, before Deb’s stroke, most of our time and attention was focused on career and family and, you know, sort of friends were a third, but, ⁓ staying healthy and staying fit. So those were kind of all parts of, I think, who we both were. met mother, ⁓ athletic sailor, biker, ⁓
⁓ family is first in academics.
Bill Gasiamis (03:44)
and academic and what field were you guys working in?
Debra and Steve (03:48)
No, am a, Steve is not academic. I am an academic. ⁓ Deb was, you know, immediately before the stroke. Deb was a tenured professor at Stanford. She had had lots of other academic jobs before that. ⁓ We met when
I was in grad school for an MBA and Deb was getting her PhD. ⁓ So, you know, she is lot smarter than I am and was willing to work a lot harder academically than I ever was. ⁓ I’ve bounced back and forth between kind of nonprofit roles, nonprofit management roles, and a career in finance and business. So I sort of…
have moved back and forth between for-profit and not-for-profit, but always sort of on the business side of things.
Bill Gasiamis (04:50)
often say when people meet my wife, Christine, for the first time and we talk about what we do and the things that we say. I always say to people that between me and my wife, we have four degrees. And then I qualify that. say, she has four and I have zero. And ⁓ she has a master’s in psychology, but ⁓ I never went to university. I never did any of that stuff.
Debra and Steve (05:10)
Yeah.
Bill Gasiamis (05:19)
So it’s very interesting to meet somebody who’s very academic and to be a part of her life when she’s in the study zone. my gosh, like I have never studied that much, that intensely, that hard for anything. And it’s a sight to behold. And I’m not sure how people go through all the academic side, all the requirements. And then also Deb, being a mom, being a friend.
being active in your community and doing all the things that you do. I just don’t know how people fit it in. So it’s a fascinating thing to experience and then to observe other people go through.
Debra and Steve (05:57)
It’s really that we had really a lot of time to talk. It was a full life.
Debra Meyerson – The Experience of a Stroke: A Slow Fall Off a Cliff
Bill Gasiamis (06:11)
Yeah, fantastic. What you did, Deb has described the ⁓ stroke as a slow fall off a cliff. What did it actually feel like in the first moments that the stroke happened?
Debra and Steve (06:28)
Two
weeks after my stroke, I am going to the, back to the classroom. I am really not aware of the damage. So right at the outset, Deb was kind of in denial. As the symptoms were first starting to set in, she was still talking about
you know, okay, this is annoying, but in three weeks I’m starting the semester ⁓ and genuinely believed she would. actually the slow fall off a cliff was really how I described the first full night in the hospital. This was in Reno, Nevada. ⁓ And Deb sort of left the emergency room talking.
slurring her words a little bit, but talking about how she was going to be back in the classroom. And then over the course of that night, from midnight to eight in the morning, they woke her every hour to do a neurological test, you move your arm, move your leg, point to this, you know, say this word and just her skills got worse and worse and worse. And in the morning,
She couldn’t move her right side at all and couldn’t make a sound. And that was the, that’s what we called the slow fall off the cliff because we knew at midnight that there was significant brain damage, but we didn’t see the ramifications of that damage. sort of happened over that eight hour period. ⁓ that Deb really wasn’t aware of any of that. was.
you know, kind of her brain was in survival mode. ⁓ But for myself and our oldest son, Danny, you know, that was sort of a feeling of helplessness. was watching the person you love kind of fade away or the capabilities fade away. And we didn’t know how low the bottom would be ⁓ without being able to do anything.
Bill Gasiamis (08:53)
Is there an explanation for that? Now, obviously Deb had a stroke, so that’s the overarching issue, the problem. But I’ve had a lot of stroke survivors explain their symptoms in that slow onset ⁓ situation, whereas mine were just there. I had a blade in my brain, the symptoms were there. Another person ⁓ had an ischemic stroke, bang, the symptoms were there.
So why does it take so long for some people to, for the symptoms to develop?
Debra and Steve (09:25)
I had a dissection five months ago for this stroke. I had really bad headaches.
Yeah, so five, six months before Deb’s stroke, she was having bad headaches. She had two episodes where she kind of almost lost consciousness. And one of them, she actually said to our son, call dad, I think I’m having a stroke. And by the time the EMS got there, she was fine. ⁓ Her stroke, it turned out was caused by a dissection, which is a tear.
in the inner wall of the artery. So in some ways it’s like a blood clot. It is an ischemic stroke because it’s the blockage of blood flow. But unlike most ischemic strokes, it’s not because of a blood clot. It’s because of this flap of, it’s not biologically skin, but it’s like a flap of skin coming across and blocking off the blood flow. And what they think happened, and it’s really just educated guessing, is that
for that six month period, the flap was there, but it kind of kept opening, closing, opening, closing. So she’d have temporary loss of blood flow to the brain, but not permanent loss.
Bill Gasiamis (11:04)
We’ll be back with more of Deborah Meyers’ remarkable story in just a moment, but I wanna pause here because what Deborah and Steve are describing is something a lot of us live with quietly. That feeling, you can be having a good moment and then grief shows up out of nowhere, or you’re working so hard to stay positive and it starts to feel like pressure instead of support. In the second half, we’ll go deeper into the cycles of grief.
the trap of toxic positivity and the shift that changed everything for Deborah when she stopped measuring recovery by who she used to be and started rebuilding identity with meaning. If this podcast has helped you feel less alone, you can support it by sharing this episode with one person who needs it, leaving a comment or subscribing wherever you’re watching or listening. All right, back to Deborah and Steve.
Debra and Steve (11:58)
And when she had those two events, it was probably stayed closed a little bit longer, but then opened up. But she had a scan, she went to neurologists and because every time she was examined, it was okay. They didn’t find the problem. And then when she had the stroke, it was a permanent blockage that just didn’t open back up again. And
Your question is a great one that I’ve never asked. I don’t know why, because what they told us was we can see the damage to the brain. The brain has been damaged. They can tell that on the scan, but that the impact of that damage, how it will affect your motion and your speech will play out over time. And I don’t know why that was true for Deb, whereas, as you say, for some people, it seems like the impact is immediate. And that’s a, that’s a good one. I’m going to, I’m going to
Try to research that a little bit.
Bill Gasiamis (12:58)
That’s just a curious thing, isn’t it? to sort of understand the difference between one and the other. I’m not sure whether if we find out what the difference is, whether there’s say something that a stroke survivor listening can do or a caregiver can do in that situation, like what can be done? How can it be resolved? Maybe different steps that we need to take. I don’t know, but I’d love to know if there was a doctor or a neurologist or somebody who might be able to answer that.
Maybe we need to find someone.
Debra and Steve (13:29)
The doctor and the neurologist didn’t see it. Yeah, in the period before the stroke, they didn’t see it. While we were in the hospital when the stroke was happening, what they told us was at that point, there really wasn’t anything that could be done. The damage was done. So no intervention.
would lessen the damage. ⁓ again, we are far from doctors. So there’s a lot about that that we don’t know.
Bill Gasiamis (14:08)
understood. Deb, what part of your old identity was the hardest to let go?
Debra and Steve (14:14)
The Stanford professor, athlete, had really a lot of…
One hand is so difficult and independent person.
Bill Gasiamis (14:33)
Yeah.
Debra and Steve (14:34)
I am, skiing is so, I really love to ski and I am not, I am really not able to ski.
Bill Gasiamis (14:52)
understood so you were a professor, you were independent, you were physically active and all that stuff has had to stop happening at this point in time.
Debra and Steve (15:03)
I am the…striking…crossing…cycling…we are the…the…Sieve and I…
Bill Gasiamis (15:19)
You guys used to do something tandem.
Debra and Steve (15:21)
Yes,
a lot of time in the stroke across America. Well, so I think we’re sort of answering a couple of different questions at the same time. I think what Deb was saying was early on, kind of in that first three or four years, she really, you know, was giving up her role as a Stanford professor, giving up skiing, cycling, sailing, and just the…
not being a fully independent person needing so much help. That was really a lot of the struggle early on. Deb did return to a lot of those things. And that was a big part of the recovery process was realizing that she may not be able to do them the same way she used to, but there were a lot of different things. And then the cycling, Deb can’t ride a single bike, but we started riding a tandem. And that adaptation has proven
really important for us because it’s, it’s the thing we can now do together vigorously for long periods of time. That is really a, a sport that we can do together, ⁓ and love. And so that that’s really been a, an adaptive way to get back to something, not exactly the same way as she used to do it before the stroke, but in a way that is very meaningful.
Bill Gasiamis (16:46)
A lot of stroke survivors tend to have trouble with letting go of their old identity in that they feel like they need to completely pause it and put the whole identity aside rather than adapt it and change it so that you bring over the parts that you can and you make the most of them, know. And adaptive sport is the perfect way. You see a lot of people in the Paralympics becoming gold medalists after they’ve been injured.
a sports person before their injury and now all of a sudden they’re champion gold medal winning athletes because they decided to adapt and find another way to participate. And that’s what I love about what you guys just said. That’s still able to meet the needs of that identity, but in a slightly different way. What about you, Steve? Like when Deb goes through a difficult time and
she has a stroke and then you guys come home from hospital, you’re dealing with, ⁓ well, all the changes in your life as well because you become a care, while you guys describe it as a care partner, we’ll talk about that in a moment. But as a care partner, ⁓ how do you go about doing that without, and also at the same time, protecting a little bit of your needs and making sure that your needs are met? Because a lot of caregivers, care partners,
put all their needs aside and then they make it about the person who is ⁓ recovering from stroke. And then it leads to two people becoming unwell in different ways. One potentially emotionally, mentally, and the other person physically and all the other things that stroke does.
Debra and Steve (18:36)
Yeah, I mean, I think, um, Kyle was lucky in a couple of ways. One, a very close friend very early on who had been through similar situations said, you know, don’t forget, you’ve got to take care of yourself. If you don’t, you’re of no use to Deb. And so from the very beginning, I had people reminding me. I also had a ton of support in supporting Deb. Deb’s mom,
you know, came up and lived with us for six months. ⁓ So I could go back to work a lot sooner than I otherwise would have been able to go back to work. And I was fortunate that my job was fairly flexible. ⁓ But, you know, I loved my work and it meant I wasn’t focused on the caregiving or care partnering aspects of my role 24 seven. I got to go do something else independently. ⁓
We also had a lot of friends lend support as well. So, you know, I think I basically said, I’ve got to organize around supporting Deb, no question about it. But with guidance from friends, I sort of said, okay, my three priorities are going to be exercising, eating well, and sleeping well. And I really just set those out as my goals and I created ways to do that.
wall and that was sort of my physical health but also my mental health. And so, you know, sort of a problem solver and compartmentalizer by nature. So I guess maybe I was lucky that dividing up those roles was a little more natural to me than maybe it is for others. But it also took, you know, took deliberate choice to make sure not to let myself get sucked so far into the caring piece.
that I got in healthy and was lucky enough to have support so that I was able to not let that happen.
Bill Gasiamis (20:42)
Yeah, a lot of people feel guilt like this unnecessary guilt that, I can’t leave that person alone or I can’t ⁓ look after myself or take some time to myself because the other person needs me more than I need me. And that’s an interesting thing to experience people talk about in the caregiver role where they become so overwhelmed with the need to help support the other person that they… ⁓
that they have guilt any time that they step away and allocate some care to themselves. They see caring as a role that they play, not as a thing that they also need to practice.
Debra and Steve (21:29)
Yeah, yeah. Well, I think I was also lucky because Deb is so fiercely independent that she wanted as little help as she could possibly get away with. So ⁓ she was not the kind of stroke survivor that was sort of getting mad when I walked out of the room. It was like she was trying to kick me out of the room at times that I shouldn’t leave the room. And so, you know, again, ⁓
Deb was not a demanding, again, she just wanted as little help as she could possibly survive with. And that probably made it easier for me to not feel guilty because it’s like, well, that’s what she wants. She wants me to get out of here as long as she was safe.
Navigating Caregiving: Balancing Needs and Support
Bill Gasiamis (22:16)
That mindset is a really useful one. It makes it possible for people to activate neural plasticity in the most ⁓ positive way. Because some people don’t realize that when it’s hard to do something and then the easier thing is to say, Steve, can you go get me that or can you do this for me? That neural plasticity is also activated, but in a negative way. ⁓
How does your recovery or your definition of recovery evolve over time? How did it change over time?
Debra and Steve (22:57)
⁓ How did how you think about recovery change over time? The realizing I had to build realizing I had the
of my identity and my life. The same past and writing a book. ⁓ Three, four years ago, four years after my stroke, really, well, ⁓
I am really, I am so committed to doing the best. No. I mean, you know, the first three or four years after Deb’s stroke, it really was all about trying to get back to who she used to be. Therapy, therapy, therapy, therapy, therapy, work hard, we’ll get back to life as we do it. And when Deb said,
when she lost tenure and said she wanted to write a book, I thought she was nuts. was like, you know, her speech wasn’t as good then as it is now. you I was at her side when she wrote her first academic book and that was brutal and she didn’t have aphasia. So I was like, I really thought she was nuts. But in hindsight, it really was that process of writing a book that got her to turn her knowledge about identity onto herself.
that really changed her view of what recovery meant. She sort of started to let go of recovery means getting back to everything I used to be doing and recovery means how do I rebuild an identity that I can feel good about? May not be the one I’d ideally want, but in the face of my disabilities, how do I rebuild that identity so that I can rebuild a good and purposeful and meaningful life? that really was an evolution for both of us.
over the five-year book writing period. I sometimes say it was the longest, cheapest therapy session we could have gotten because it really was that kind of therapeutic journey for us. And really a lot of the 25 people are in the book and the friends and colleagues are
in the book, really a lot of the colleagues. Deb was a social scientist and a researcher and she didn’t want to write a memoir. She wanted to write a research book. It has elements of a memoir because her story and our story is threaded throughout. But, you know, we learned so much from the interviews Deb did and
and I was not involved in the interviewing process, but having that diversity of stories and understanding some of the things that were very common for stroke survivors and other things that were so different from survivor to survivor helped her, helped us on our journey. So that book writing process had so many benefits.
Bill Gasiamis (26:49)
Very therapeutic, isn’t it? I went on a similar journey with my book when I wrote it and it was about, again, sharing other people’s stories, a little bit about mine, but sharing what we had in common, know, how did we all kind of work down this path of being able to say later on that stroke was the best thing that happened. Clearly not from a health perspective or from a ⁓ life, ⁓ you know.
the risk of life perspective, from a growth perspective, from this ability to be able to ⁓ look at the situation and try and work out like, is there any silver linings? What are the silver linings? And I get a sense that you guys are, your idea of the book was in a similar nature. Do you guys happen to have a copy of the book there?
Debra and Steve (27:39)
Yes. Of course. Don’t we have it everywhere?
Bill Gasiamis (27:42)
Yeah, I hope so. Identity theft, yep. I’ve got my copy here somewhere as well. Now, how come I didn’t bring it to the desk? One second, let me bring mine. Yes. There you go, there’s mine as well. I’ve got it here as well. So it’s a really lovely book. ⁓ Hard copy. ⁓
Debra and Steve (27:52)
Yeah.
You
must have the first edition not the second edition. Because we didn’t print the second edition in hard copy so it’s not a white cover can’t tell in the photo.
Bill Gasiamis (28:07)
okay, that’s why.
That is a blue cover.
Debra and Steve (28:17)
⁓ No, the paper cover on the front.
Bill Gasiamis (28:20)
The paper cover is a white cover.
Debra and Steve (28:22)
Yeah.
So that’s actually the first edition of the book that came out in 2019. And then the second edition just came out about two months ago. ⁓ And they are largely the same. But the second edition has a new preface that sort of, because we wrote that in 2019 and then had five years of working on Stroke Onward and learning more, we kind of brought our story up to 2020.
2024 and then two chapters at the end, one with some of the insights we’ve learned ⁓ kind of since writing the first book and a final chapter about what we think might need to change in the US healthcare system to better support stroke survivors. So we’ll have to get you a copy of the new one. Yeah.
Bill Gasiamis (29:13)
Yeah, why not? Signed copy, thank you very much. ⁓
Debra and Steve (29:15)
Yeah,
and the Julia Wieland. ⁓ It’s available on audiobook as well via, we were fortunate to be able to work with a great narrator named Julia Wieland, who’s an award winning audiobook narrator and actually has a business called Audio Brary that she started to really honor narrators and help promote the narrating of audio.
the narrators of audio books. ⁓ well, make sure you send us an email with the right mailing address and we’ll get you new copy.
Bill Gasiamis (29:55)
Yeah, that’d be lovely. So what I’ll do also is on the show notes, there’ll be all the links for where people can buy the book, right? We won’t need to talk about that. We’ll just ensure that they’re included on the show notes. I love the opening page in the book. ⁓ It’s written, I imagine, I believe that’s Deborah’s writing.
Debra and Steve (30:14)
⁓ yeah, yeah. yes, we have a signed copy of the first edition. Yeah.
Bill Gasiamis (30:20)
So it says true recovery is creating a life of meaning. Deborah Meyerson. Yeah, you guys sent me that quite a while ago. By the time we actually connected, so much time had passed. There was a lot of people involved in getting us together. And you know, I’m a stroke survivor too. So things slipped my mind and we began this conversation to try and get together literally, I think about a year earlier. So I love that I have this.
this copy and I’m looking forward to the updated one. ⁓ And it’s just great that one of the first things that Deb decided to do was write a book after all the troubles. Now your particular aphasia Deb, I’m wondering is that also, does that make it difficult for you to get words out of your head in your writing as well and typing?
Debra and Steve (31:13)
Yes, dictation is my dictation. It’s so hard. Speaking and writing isn’t the same.
Bill Gasiamis (31:31)
Speaking and writing is the same kind of level of difficulty.
Understanding Aphasia: A Spectrum of Experiences
Debra and Steve (31:35)
Yeah, and the ⁓ other survivors in aphasia didn’t, Michael is. Want me to help? Yeah. Yeah, just that, and I think you know that there are so many different ways aphasia manifests itself and word finding is Deb’s challenge and it’s true whether she’s speaking or writing.
other people and a guy who rode cross country with us, Michael Obellomiya, he has fluent aphasia. So he speaks very fluently, but sometimes the words that come out aren’t what he means them to be. So the meaning of what he says, even though he says it very fluently, and he also has, I think, some degree of receptive aphasia so that he hears what people are saying, but sometimes the instruction or the detail doesn’t.
register for him and so aphasia can be very very different for different people.
Bill Gasiamis (32:37)
Yeah, there’s definitely a spectrum of aphasia. then sometimes I get to interview people really early on in their journey with aphasia and, ⁓ and speech is extremely difficult. And then later on, if I meet them again, a few years down the track, they have ⁓ an improvement somewhat. ⁓ perhaps there’s still some difficulty there, but they can often improve. ⁓ how much different was the
Debra and Steve (33:08)
15 years ago? I don’t know speech at all.
Bill Gasiamis (33:23)
No speech at all.
Debra and Steve (33:24)
Yeah. So Deb, it took several weeks for her to even be able to create sounds, maybe a month or two before she was sort of repeating words. ⁓ We have a great story of the first time Deb actually produced a word out of her brain. So it wasn’t an answer to a question or a therapy exercise.
but we were sitting around a table and a bunch of people who hadn’t had strokes were saying, what’s that? No, my family. Yeah, with your brother. No, our family. Yeah. Danny and… Okay, anyway. We were talking about, what was that movie where the guy trained a pig to…
do a dog show and what was the pig’s name and none of us could remember it and Deb just blurted out, babe. And it was like we started screaming and shouting because it was the first time that something that started as an original thought in her head actually got out. And that was like four months after her stroke. ⁓ A year after her stroke, it was really just isolated words.
⁓ She then did a clinical trial with something called melodic intonation, a kind of speech therapy that tries to tap into the other side of the brain, the singing side of the brain. And then I would say, you know, it’s been, mean, Deb’s speech is still getting better. So it’s just marginal improvement ⁓ over time.
Bill Gasiamis (35:10)
Yeah, Deb, what parts of Professor Deborah Meyerson remain and what’s entirely new now?
Debra and Steve (35:19)
⁓ The sharing knowledge and trading knowledge is the same. The new is how I do it. More constraints, I need help.
really help and I am so bad at asking. Really bad at asking. I have really a lot of phases of classes and
Ballroom classes, you know ballroom dancing. Yeah, no In the work we do Deb’s favorite thing to do is to teach so we’ve been invited, you know ⁓ Quite a few speech therapists in the United States are using identity theft as part of the curriculum in their aphasia course in the speech language pathology programs
Bill Gasiamis (36:28)
So
speaker-2 (36:28)
I’ll be.
Debra and Steve (36:48)
⁓ and we’ve been invited to visit and talk in classes. And Deb just loves that because it’s back to sharing knowledge. It’s a different kind of knowledge. It’s not about the work she did before her stroke, but it’s about the work and the life experience since. that is still, Professor Deb is still very much with us.
Bill Gasiamis (37:14)
Yeah, Professor Deb, fiercely independent, ⁓ doesn’t like to ask for help, ⁓ still prefers to kind of battle on and get things done as much as possible and suffer through the difficulty of that and then eventually ask for help. Do you kind of eventually?
Debra and Steve (37:32)
Yeah,
yeah, you skipped the part about correcting everything her husband says. That’s not quite exactly right.
Bill Gasiamis (37:40)
Well, that’s part of the course there, Steve. That’s exactly how it’s meant to be. And you should be better at being more accurate with what you have to say.
Debra and Steve (37:49)
I thought we’d be on the same side on this one.
Bill Gasiamis (37:53)
Sometimes, sometimes as a host, you know, I have to pick my hero and as a husband, I truly and totally get you. Deb, you describe experiencing cycles of grief. ⁓ What does that actually look like in a day-to-day life now? And I kind of get a sense of what cycles of grief would mean, but I’d love to hear your thoughts, your version of what that means.
Debra and Steve (38:22)
Every day, hour every day, small ways and big ways. Like one year ago,
Well, grandmothers. Can I correct you? It was 16 months ago. I’m going to get her back. Yeah. That’s what she does to me all the time. I am really happy. Make sure you explain. don’t know if they would have caught what it was that made you so happy. Grandmother. Sarah, Danny and Vivian.
I know, you don’t have to tell me. Just that we became grandparents for the first time. And Deb was ecstatic. I am so happy and also really frustrated.
And I don’t… crawling… no. You want me to help? I mean, you know, it’s sort of the day we got there, the day after the baby was born in New York and Deb was over the moon and the next morning…
We were walking back to the hospital and Deb was just spring-loaded to the pissed off position. She was getting mad at me for everything and anything and she was clearly in an unbelievably bad mood. And when I could finally get her to say what was wrong, it was that she had been playing all night and all morning all the ways in which she couldn’t be the grandmother she wanted to be. She couldn’t hold the baby. She couldn’t change a diaper. She couldn’t, you know,
spell the kids later on to give them a break by herself because she wouldn’t be able to chase no one is our grandson around. And so she had had really kind of gone into grieving about what she had lost just in the moment when she was experiencing the greatest joy in her life. And that’s an extreme example of a cycle of grief. And but it happens, as Deb was saying, it happens.
every hour, maybe three times an hour where you’re doing something that’s good, but then it reminds you of how you used to do that same thing. so, you know, when we talk about and write about cycles of grief, it’s the importance of giving yourself that space to grieve because it’s human. You lost something important and it’s human to let yourself acknowledge that.
But then how do you get through that and get back to the good part and not let that grief trap you? And that story from 16 months ago in New York is sort of the, that’s the poster child, but it happens in big ways and small ways every day, 10 times a day.
Bill Gasiamis (42:00)
Sadness is a thing that happens to people all the time and it’s about knowing how to navigate it. And I think people generally lack the tools to navigate sadness. They lack the tools to ⁓ deal with it, to know what to do with it. But I think there needs to be some kind of information put out there. Like you’re sad. Okay. So what does it mean? What can it mean? What can you do with it? How can you transform it? Is it okay to sit in it? ⁓
What have you guys learned about the need for sadness in healing?
Debra and Steve (42:35)
grief and sadness is so important and through the really once it’s an hour.
The Importance of Sadness in Healing
From my perspective, I have learned a ton about sadness because I don’t have a good relationship with sadness. In most cases, it’s a great thing. just, you know, I’m a cup is nine tenths full person all the time and I tend to see the positive and that’s often very good. But it makes it really hard for me to live with other people’s sadness without trying to solve the problem.
Bill Gasiamis (43:12)
Hmm.
Debra and Steve (43:35)
And we actually came up with a phrase because sometimes if I get positive when Deb is sad, it just pisses her off. She doesn’t want to be talked out of it. And so we now talk about that dynamic as toxic positivity because, you know, most people think of positivity as such a positive thing. And yet
If someone needs to just live in sadness for a little while, positivity can be really toxic. And I think that’s been my greatest learning, maybe growth is sort of understanding that better. I still fall into the trap all the time. devil tell you there are way too many times when, you know, my attempts to cheer her up are not welcomed.
but at least I’m aware of it now. ⁓ And a little less likely to go there quite as quickly.
Bill Gasiamis (44:38)
Hmm. What I, what I noticed when people were coming to see me is that it was about them. They would come to see me about them. It wasn’t about me and what they made them do. What made what their instinct was, was to, if I felt better, they felt better and all they wanted to do was feel better and not be uncomfortable and not be struggling in their own ⁓ mind about what it’s like.
to visit Bill who’s unwell. And that was the interesting part. It’s like, no, no, I am feeling unwell. I am going to remain feeling unwell. And your problem with it is your problem with it. You need to deal with how you feel about me feeling unwell. And I appreciate the empathy, the sympathy, the care I do. But actually, when you visit me, it shouldn’t be about you. It shouldn’t be, I’m gonna go and visit Bill.
and I hope he’s well because I don’t want to experience him being unwell. It should be about you’re just gonna go visit Bill however you find him, whatever state he’s in, whatever condition he’s in, and therefore ⁓ that I think creates an opportunity for growth and that person needs to consider how they need to grow to adapt to this new relationship that they have with Bill.
⁓ which is based now around Bill’s challenges, Bill’s problems, Bill’s surgery, Bill’s pos- the possibility that Bill won’t be around in a few months or whatever. Do you know what I mean? So it’s like, ⁓ all, all the, ⁓ the well-meaning part of it is well received, but then it’s about everyone has a, has to step up and experience growth in this new relationship that we have. And some people are not willing to do it and then they don’t come at all.
They’re the people who I find other most interesting and maybe ⁓ the most follow their instincts better than everybody where they might go, well, I’m going to go and say, Bill, he’s all messed up. ⁓ I don’t know how I’m going to deal with that. can’t cope with that. And rather than going there and being a party pooper or not knowing what to say or saying the wrong thing, maybe I won’t go at all. And they kind of create space.
Debra and Steve (46:58)
So.
Bill Gasiamis (47:01)
for your recovery to happen without you having to experience their version of it.
Debra and Steve (47:09)
Yeah, that’s it. That’s really interesting to hear you talk about it that way. And I would say very generous to hear you talk about it that way, because most of the time when we’ve heard people talk about it’s that because people talk about the fact that because other people don’t know what to say, they don’t say anything or they don’t come.
But that then creates an isolation that’s unwanted. You’re talking about it as a, maybe that’s a good thing. They’re giving me space, given their skill or willingness to deal with it. Whereas I think a lot of people feel that when people just disappear because they don’t know what to say, that’s a lack of caring and a lack of engagement. ⁓
interesting to hear your take on it. think there’s a close cousin to this that Deb felt very intensely is that some people in the attempt to be understanding and supportive really took on an air of pity. And that there were some people that
that we had to ask not to come if they couldn’t change how they were relating to Deb because it was such a like, ⁓ you poor thing that was incredibly disempowering. Whereas there were other people who had the skill to be empathetic in a supportive way.
And so, I mean, in some ways, I think we’ve learned a lot, not that we necessarily do it right all the time, but we’ve learned a lot about how to try to support other people by what has and hasn’t worked in supporting us.
Bill Gasiamis (49:20)
Yeah, it’s a deeply interesting conversation because people get offended when they need people the most that don’t turn up. And I, and I understand that part of it as well. And then in, in time, ⁓ I was, I was like that at the beginning, but then in time, I kind of realized that, okay, this is actually not about me. It’s about them. They’re the ones struggling with my condition. They don’t know how to be. And maybe it’s okay for them.
not to be around me because I wouldn’t be able to deal with their energy anyway. ⁓ yeah. So Deb, what made you turn to advocacy? What made you decide that you’re gonna be an advocate in this space?
Finding Purpose Through Advocacy
Debra and Steve (50:08)
⁓
Feeling purpose and meaning. Survivors? Yes. And caregivers? Yes. Really a lot of risky is really… ⁓
medical, medical. Yeah. I mean, I I, I know what Deb is trying to say, which is, you know, once she got past the life threatening part and kind of on her way and was relatively independent, she was drawn back to saying, I want to live a life that has meaning and purpose. And so how
in this new state, can I do that? And Deb, as I’m sure you know by now, doesn’t think small, she thinks big. And so what she’s saying is, yes, I want to help other people, other survivors, other care partners, but really we need a better system. Like I can only help so many people by myself, but if we can actually advocate for a better healthcare system in the United States that treats stroke differently.
then maybe we can make a difference for a lot of people. that’s kind of the journey we’re on now. the survivors and caregivers, advocacy is so important to California or even the state.
Building the Stroke Onward Foundation
Bill Gasiamis (52:05)
Yeah, advocacy is very important ⁓ and I love that I Love that you become an advocate and then you find your purpose and your meaning you don’t set out to Find your purpose and your meaning and then think what should I do to find my purpose of my meaning it tends to catch Catch go around the other way. I’m gonna go and help other people and then all of a sudden it’s like, ⁓ this is really meaningful I’m enjoying doing this and raising awareness about that condition
that we’ve experienced and the challenges that we are facing. And wow, why don’t we make a change on a as big a scale as possible? Why don’t we try to influence the system to take a different approach because it’s maybe missing something that we see because we’re in a different, we have a different perspective than the people who are providing the healthcare, even though they’ve got a very big kind of, you know, their purpose is to help people as well.
their perspective comes from a different angle and lived experience, I think is tremendously important and ⁓ missed and it’s a big missed opportunity if ⁓ lived experience is not part of that defining of how to offer services to people experiencing or recovering a stroke or how to support people after they’ve experienced or recovering from a stroke. ⁓ I love that. So that
led you guys to develop the foundation, stroke onward. it a foundation? it a, tell us a little bit about stroke onward.
Debra and Steve (53:42)
In US jargon, we’d call it a nonprofit. Generally, foundations are entities that have a big endowment and give money away. We wish we had a big endowment, but we don’t. We need to find people who want to support our work and make donations to our nonprofit. And yeah, we now have a small team. ⁓ Deb and I
given our age, given that we’re grandparents, we were hoping not to be 24 sevens. So needed people who were good at building nonprofits who were a little earlier in their careers. And we’ve got a small team, a CEO, a program manager and a couple of part-time people ⁓ who are running a bunch of programs. We’re trying to stay focused. We’re trying to build community with stroke survivors, care partners, medical professionals.
We’ve got an online community called the Stroke Onward Community Circle that we just launched earlier this year. We’re hosting events, ⁓ some in medical settings that we call Stroke Care Onward to really talk with both ⁓ a diverse group of medical professionals, as well as survivors and care partners about what’s missing in the system and how it can be improved. ⁓ And then a program that we call the Stroke Monologues, which is sort of a
a TEDx for stroke survivors where survivors, care partners, medical professionals can really tell their story of the emotional journey in recovery. And we want to use all of that to sort of build a platform to drive system change. That’s kind of what we’re trying to build with Stroke Onward.
Bill Gasiamis (55:32)
I love that. I love that TEDx component of it. ⁓ People actually get to talk about it and put out stories and content in that way as well.
Debra and Steve (55:35)
Yeah.
⁓
Yeah. Denver, Pittsburgh, ⁓ Boston, and Oakland and San Francisco. We’ve now done six shows of the stroke monologues and a big part about our work in the coming year.
is really trying to think about how that might scale. can we, you know, it’s a very time consuming and therefore expensive to host events all the time. So how we can work with other organizations and leverage the idea ⁓ so that more people can get on stage and tell their story. ⁓ Also how we capture those stories on video and how we can do it virtually. So that’s a big part of what the team is thinking about is, you know, how do we
Cause you know, at the end of the day, we can only do as much as we can raise the money to hire the people to do. So, that, that developing a strategy that hopefully can scale and track the resources that it takes to make more impact. That’s kind of job one for 2026.
Bill Gasiamis (57:05)
Yeah, I love it. Lucky you haven’t got enough jobs. That’s a good job to have though, right? ⁓ So if you were sitting, if you guys were both sitting with a couple just beginning this journey, what would you want them to know? What’s the first thing that you would want them to know?
Debra Meyerson – Advice for New Stroke Survivors
Debra and Steve (57:12)
Yeah.
Don’t have a stroke.
Bill Gasiamis (57:28)
Profound.
Debra and Steve (57:29)
Yeah. Yeah. I
mean, I think, you know, it’s a journey and think of it as a journey and try to get as much as much of your capabilities back as you can. But don’t think of recovery as just that. It’s a much broader journey than that. It’s rebuilding identity. It’s finding ways to adapt.
to do the things you love to do, to do the things that bring you meaning and purpose and create that journey for yourself. Nobody else’s journey is gonna be the right model for yours. So give yourself the time, space, learn from others, but learn from what’s in your heart as to the life you wanna build with the cards you’ve been dealt.
Bill Gasiamis (58:25)
Yeah. What are some of the practices or habits that have helped you guys as a couple, as partners stay connected?
Debra and Steve (58:34)
⁓ It’s, it’s hard. mean, and we’ve gone through phases, ⁓ where I think, you know, in some ways early on after the stroke, we may have been as close or closer than we’ve ever been. as Deb got better ironically and wanted to do more.
Bill Gasiamis (58:39)
You
Debra and Steve (59:01)
that created a different kind of stress for us. ⁓ stress is the key. No, stress is not the beauty. I had so much stress. Yeah. And sometimes I say stress is a function of the gap between aspiration and capability and
while Deb’s capabilities keep growing, I think maybe her aspirations grow faster. And the question then says, how do you fill that gap? And so I think Deb struggles with that. And then for me, a big struggle is, so how much do I change my life to support Deb in filling that gap versus the things I might want to do that I still can do? So.
You know, when Deb decided to write a book, I really wasn’t willing to give up my other nonprofit career, which was very meaningful to me. And I felt like I was midstream, but we had to find other ways in addition to my help nights and weekends to get Deb help so she could write the book she wanted to write. Whereas when the book came out and we decided to create Stroke Onward, that was a different point in time. And I was sort of willing to.
cut back from that career to come build something with Deb. So I think again, we hate to give advice because everybody’s journey is different, but things change and go with that change. Don’t get locked into a view of what the balance in relationship should be. Recognize that that’s gonna be a never ending process of
creating and recreating and recreating a balance that works for both of us.
Bill Gasiamis (1:01:04)
Hmm. What’s interesting. Some of the things that I’ve gone through with my wife is that I’ve kind of understood that she can’t be all things that I needed to be for me. And I can’t be all things that she needs me to be for her. And we need to seek that things where we lack the ability to deal to provide those things for the other person. The other person needs to find a way to accomplish those tasks needs, have those needs met, whatever with
in some other way. for example, my whole thing was feeling sad and I needed someone to talk me through it and my wife wasn’t skilled enough to talk me through it, well, it would be necessary for me to seek that support from somebody else, a counselor, a coach, whomever, rather than trying to get blood out of a stone, somebody who doesn’t have the capability to support me in that way. Why would I expect that person to…
all of a sudden step up while they’re doing all these other things to get through the difficult time that we were going on to that we’re dealing with. So that was kind of my learning. was like, I can’t expect my wife to be everything I need from her. There’ll be other people who can do that. Who are they? And that’s why the podcast happened because I’ve been talking about this since 2012 and since 2012 and
⁓ well, yeah, that’s 2012 as well. 2012 anyhow. ⁓ I’ve been talking about it since.
Debra and Steve (1:02:41)
You’re both our roles. You’re saying it and then correcting yourself.
Bill Gasiamis (1:02:45)
Yeah. Yeah. Yeah. I have a part of me that corrects me as I go along in life. Yeah. Sometimes I don’t listen to it. ⁓ but today was a good one. The thing about it is I have a need, a deep need to talk about it all the time. That’s why I’ve done nearly 400 episodes and those 400 episodes are therapy sessions. Every time I sit down and have a conversation with somebody and I, and even though my wife has a
I, ⁓ masters in psychology. I wouldn’t put her through 400 conversations about my stroke every single day or every second day. You know, it’s not fair because it’s not her role. I, ⁓ I talked to her about the things that we can discuss that are important, for the relationship and for how we go about our business as a couple. But then there’s those other things that.
she can’t offer her perspective because only stroke survivors know how to do that. And I would never want her to know how to ⁓ relate to me having had a stroke and having the deficits that I have and how it feels to be in my body. I would never want her to be able to relate to me. So ⁓ it’s, that’s kind of how I see, you know, the couple dynamic has to play out. have to just honor
the things that each of us can bring to the table and then go elsewhere to ⁓ have our needs met if there’s needs that are left unmet.
Debra and Steve (1:04:23)
Yeah. Really. Well, it’s good to know that if this is a ⁓ helpful therapy session for you, you won’t mind if we send you a bill. Yeah.
Bill Gasiamis (1:04:32)
Yeah. Yeah. Send it along with the book. Just put it in the front cover and then, and then I’ll make a payment. ⁓ Well guys, it’s really lovely to meet you in person and have a conversation with you. Have the opportunity to share your mission as well. Raise awareness about the book, raise awareness about stroke onward. I love your work. ⁓ And I wish you all the best with all of your
endeavors, personal, professional, not for profit. And yeah, I just love the way that this is another example of how you can respond to stroke as individuals and then also as a couple.
Debra and Steve (1:05:18)
Yeah, thank you. Well, and we hope you’ll join our online community and that includes the opportunity to do live events. yes. And maybe there are some additional therapy sessions. Yes. On our platform and chat with people and well, all over the place. So yeah, please join us.
Bill Gasiamis (1:05:43)
That sounds like a plan. Well, that’s a wrap on my conversation with Deborah and Steve. If Deborah’s slow fall off a cliff description resonated with you, leave a comment and tell me what part of your recovery has been the hardest to explain to other people. And if you’re a care partner, I’d love to hear what you needed most early on. You’ll find the links to Deborah and Steve’s work, their book, identity theft and their nonprofit stroke onward in the show notes.
And if you’d like to go deeper with me, grab my book, The Unexpected Way That a Stroke Became the Best Thing That Happened via recoveryafterstroke.com/book. Also, you can support the podcast on Patreon by going to patreon.com/recoveryafterstroke. Thank you for being here. And remember, you’re not alone in this journey.
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus.
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