A single weekend can reroute a life. When Deborah Meyerson, a tenured Stanford professor, suffered a stroke that stole her speech and altered her body, she and her husband, Steve Zuckerman, had to reimagine everything—career, communication, purpose, and the very shape of partnership. What began as an “it’ll pass” blip became a blueprint for growing forward, not going back.
We dig into what aphasia actually is—beyond speech—and how it reshapes identity, relationships, and daily life. Deb shares how writing the second edition of Identity Theft: Rediscovering Ourselves After Stroke became both research and therapy, drawing on dozens of survivor and care partner stories to reveal two truths: recovery can keep unfolding for years, and identity work is as essential as physical rehab. Steve opens up about care partnership without resentment, the constant calibration of boundaries, and why permission to grieve is inseparable from permission to grow.
You’ll also hear about Stroke Onward, their nonprofit pushing the healthcare system to support the emotional journey of recovery, and the Stroke Onward Community Circle (SOCC)—an interactive hub connecting survivors, families, and clinicians with free resources, conversation, and advocacy. We explore technology that extends agency and hope: an AI-generated voice that amplifies Deb’s talks, a neural sleeve that improves gait, and a newly approved vagus nerve stimulation implant that pairs with intensive therapy to accelerate learning and function. The thread through it all is practical wisdom: find the “why” beneath your old “what,” meet people where they are, and build a life you can love in tandem.
Subscribe, share this story with someone who needs it, and leave a review to help others find these conversations. Then visit strokeonward.org to explore resources, join the community, and keep the movement toward whole‑person recovery growing.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_00 (00:08):
Welcome to Real Talk with Tina and Anne.
I am Anne, and today's episodeis called Life in Tandem for a
Reason.
And I named it that because thisis a partnership with
perseverance and purpose afterlife took an unexpected turn.
My guests are Deborah Meyerson.
(00:30):
She was a former tenuredStanford professor, and Steve
Zuckerman, her husband and carepartner.
Together they co-authoredIdentity Theft: Rediscovering
Ourselves After Stroke.
And this is the second edition.
And they have founded thenonprofit Stroke Onward to
support stroke survivors andfamilies, and they help
(00:51):
survivors rebuild not justphysical strength, but a sense
of self.
Deborah's 2010 stroke changedeverything for her and her
husband and her families, hercareer, her independence, even
her voice, but not herdetermination.
And together, Deborah and Stevehave redefined what it means to
(01:14):
live and love in the aftermathof trauma.
Deborah and Steve, thank you somuch for being here today.
Thank you.
Thanks for having us.
Let's start at the beginning.
You wrote that sometimes wethink life will go one way.
And then we realize that ourplans were not going to happen.
(01:35):
I mean, you were a tenuredStanford professor and it didn't
go the way that you planned atall.
You at first thought your strokewas a blip, but it turned out to
be extremely life-altering.
Can you take us back to thatLabor Day weekend in 2010?
(01:56):
What happened?
SPEAKER_01 (01:58):
Uh the for six months before the stroke, I had
a really headache, really severeheadache.
I am so uh the the doctorsdidn't know, and the the
(02:22):
neurologists didn't know.
Yeah.
SPEAKER_04 (02:25):
Want me to help a little?
Yeah.
Yeah.
So so Deb had had some symptoms,but went through all the testing
you would go through and theydidn't find anything.
On that Labor Day weekend, wewere actually headed to the
mountains to Lake Tahoe with twoof our three kids and a friend
and our dog.
And Deb's leg just startedacting funny.
(02:48):
It didn't hurt, um, but it waskind of buckling a little bit at
certain times.
Deb being Deb was, yeah, don'tworry about it.
It's gonna be fine.
And we went off.
And to make a long story short,um, after a hike and a dinner
and Deb sleeping overnight, um,she asked for some aspirin and
(03:10):
had trouble reaching for it withher right hand.
And somewhere I had heard thatif you're having trouble on one
side of the body, arm and leg,that could be a sign of a
stroke.
And so with the leg whackingfunny and the arm not working,
we just got her straight to ahospital.
(03:31):
Uh and and that that began anunwanted journey.
Yes.
Um that was very quickly,quickly diagnosed as a stroke.
Um, and uh and and you mentionedthat sort of we thought of it as
a blip.
Yeah.
Um, I'm a I'm an optimist bynature, you know, every cup is
(03:52):
three-quarters full.
Um and Deb is a workhorse.
And, you know, even after thedevastating impact, and you
know, immediately following thestroke, about 24 hours after the
first symptoms of the stroke,Deb was fully paralyzed on the
right side, had no voicewhatsoever, couldn't get a sound
(04:15):
out.
You know, she got into therapy,you know, two months in the
hospital, lots of complexity.
But when she finally got intotherapy, things were improving.
And we just thought, you know,with access to good therapy and
the work ethic that Deb has,eventually we'd get back to life
as we knew it.
But that said, um, you know, thebody and and health had
(04:38):
different plans and and Debstill lives while she's
recovered a tremendous amount ofcapability.
Um, she still lives withdisabilities and particularly
the aphasia, which is acommunication disorder, yeah,
um, made it impossible for herto go back to to being a
full-time professor.
SPEAKER_01 (04:56):
Uh I am still uh professor.
SPEAKER_00 (05:03):
Oh, you are?
Yeah, yeah, yeah, yeah.
Oh, that's amazing.
That's great.
SPEAKER_04 (05:08):
No, I think being part of that community is is
really important.
Uh kind of our work withStanford now is more with people
in the med school uh because ofour work around stroke and with
stroke onward.
Uh but Deb still maintains heraffiliation with the School of
Education, um, even though she'snot actively engaged in that, in
(05:30):
that kind of academia anymore.
SPEAKER_00 (05:33):
Okay.
Well, you know what?
That's amazing that you canstill keep that community.
SPEAKER_01 (05:38):
Yeah, yeah.
SPEAKER_00 (05:39):
Yeah, I agree.
SPEAKER_01 (05:40):
Yeah.
SPEAKER_00 (05:41):
You also you just mentioned aphasia.
Could you talk more aboutexactly what that is?
I mean, I've known some peoplethat have had that.
And I also know of some peoplethat, you know, with lots of
disabilities, and you almostfeel sometimes that you're
trapped.
Um, can you talk more aboutthat?
SPEAKER_01 (06:01):
Speech is really important.
It's uh and it's two one yearafter my stroke, I have no
speech at all.
Really little speech.
Wow.
And I am it's um really hard touh be the the f professor of the
(06:28):
organizational behavior.
Three years after my stri uh uhs joke, I uh really had um
knowed uh my dean of the edgeschool.
SPEAKER_04 (06:44):
Nobody helped?
SPEAKER_01 (06:45):
Yeah.
SPEAKER_04 (06:50):
Stanford has a policy that says if you can't
return to your job after threeyears of medical leave, you
know, they need to full positionwith someone else.
And and that was, you know, thatwas sort of we we sometimes call
that trauma number two becausethat was sort of what forced us
to realize that life would bedifferent.
You asked about aphasia and umI, you know, that it's a it's a
(07:14):
communication disorder.
It's not just a speech disorder.
So for Deb, aphasia can takemany different forms or have
many different ramifications.
For Deb, hers is what's calledexpressive aphasia, where she
has thoughts clear in her mind,but being able to get them out
either through words or shedoesn't have use of her right
(07:37):
hand, she can type with herleft.
But the same, you know, again,it's not a speech challenge,
it's a communication challenge.
So the same difficulty findingwords to speak is true finding
words to type as well.
There are other forms ofaphasia, like fluent aphasia,
where people say very fluently,but often the words that come
(07:59):
out aren't the words they mean.
So the meaning isn't there.
There's also something calledreceptive aphasia, which, you
know, even for us, it's hard tounderstand how frustrating that
would be, where the hearing isfine.
So the sound is getting into thethe ears, and but the brain's
not processing it.
(08:20):
So you hear sounds, but theymean nothing to you.
So these are all different formsof aphasia or different
manifestations of aphasia.
And aphasia, about a third ofall stroke survivors suffer some
kind of aphasia.
And then there are other causesof aphasia as well.
(08:41):
But stroke, stroke is theleading cause of aphasia.
SPEAKER_01 (08:44):
And uh the um Gabby Gifford is uh the the gun uh the
gun.
SPEAKER_04 (08:54):
She has the the the Gabby Giffords, who's the
Congresswoman from Arizona whoRight.
SPEAKER_00 (09:01):
I know who she is, yeah.
SPEAKER_04 (09:02):
And and her aphasia is very similar to Deb's, even
though um it very differentcause, you know, very different
kind of injury to the brain, butclearly and that's one of the
things about aphasia, but alsoabout stroke more broadly, is
the brain is so complicated.
(09:23):
And, you know, just if theinjury to the brain, whether
it's caused by a stroke or by agunshot wound, if that injury is
just, you know, a millimeter tothe left or a millimeter to the
right, the disabilities that itcreates could be dramatically
different because, you know,just different parts of the
brain control, you know, it'sit's the nerve center or the the
(09:46):
control center for so much ofour really all of our bodily
action.
So depending on what part isdamaged, that's that's what
creates very, very different uheffects of a stroke.
SPEAKER_00 (09:58):
You spent two months in four hospitals and came out
unable to speak like you'retalking about.
And for a professor whose lifewas built on words, you know.
I mean, that must have been oneof the hardest parts for this.
I mean, your life was teachingand making a difference at
(10:19):
Stanford, and your loss ofidentity was a theme that is
woven throughout your story andothers.
So many times what we do, youknow, is our mission.
That's what who we are.
And you said I was stillthinking like a social
scientist, but my body justwouldn't do what I needed it to
do.
(10:39):
Could you talk more about thatloss of identity?
SPEAKER_01 (10:42):
I am still the the same person, and the the I am
not the same person.
SPEAKER_04 (10:54):
It's still it's the the the body is the identity is
uh central to my w what I liketo say is that is that and there
are lots of like funny anecdotesof how we discovered even very
early after the stroke, despiteDeb's inability to talk at all
(11:17):
or move her right side, thatthat the Deb we knew was still
inside.
Um and so in a lot of ways, shereally is still the same person,
same same worth ethic, sameideas, same values, but her
ability to express all of thathas changed because she has both
physical disabilities and mostconsequentially the aphasia that
(11:41):
affects her communication.
And when Deb said, you know, soin some ways I'm still the same
person, yes, can't necessarilylive out that person the same
way, and that is a frustrationthat Deb lives every day.
SPEAKER_00 (11:57):
Yeah, uh three times a day.
I'm so sorry for that.
I mean, that must really befrustrating.
You know, I was a as a kid, Ihave autism, and so as a kid, it
was very difficult for me tospeak.
It's taken me, it took me yearsto develop my speech and to get
(12:19):
where I am.
I understand a little bit ofwhat it feels like for your
brain to be saying all thesethings, but it's not coming out.
And it is very frustrating.
So I am sorry that you are goingthrough that.
Well uh 15 years ago is it'sreally long time.
SPEAKER_04 (12:40):
Yeah.
Yeah, no, but then but then asDeb said, but there are ways in
which she's a different person.
And you know, right, everybody'sidentity changes with more life
experiences.
SPEAKER_01 (12:53):
And I am a grandmother.
SPEAKER_04 (12:58):
That's a great new identity.
SPEAKER_00 (13:00):
That that's amazing.
Yes, that's a beautifulidentity.
SPEAKER_04 (13:04):
You know, there while she's incredibly
frustrated, she's also a morepatient person now than she was.
She was forced to be.
And so there are ways in which,and that's one of the themes of
the book and our is we hate theexpression silver lining, we
just don't like it because itdoesn't feel very silver.
(13:26):
But um, but there's a theorycalled post-traumatic growth.
There are ways that when you'vesuffered something horrible,
terrible, you can find ways togrow in the aftermath.
And I think that's one of thethings that I jokingly say to
Deb when she's incrediblyfrustrated, you know, there's a
really good book out there.
(13:46):
You should read it again.
Um, the one thing to understand,and it's another thing to to
live it.
It's oh, sure.
SPEAKER_00 (13:56):
Yeah.
I mean, when you you talkedabout this earlier, but when you
lost your position at Stanford,and you know, it's it's really
amazing what you guys did withthat because there are levels of
loss, but you did turn itaround.
And like you're saying, you tooka positive spin on it.
And you wrote the first editionof identity theft, and now you
(14:21):
have just released the secondedition, and you have a mission
to help others.
So taking your pain and turningit into purpose is a beautiful
thing.
Can you talk about where howthat transition that you took
and how you got to being able tojust say, you know what?
We're gonna sit down, we'regonna write this book, and we're
(14:42):
going to help others.
SPEAKER_01 (14:44):
Three and a half years after my stroke, I am
really depressed.
And I am the I am going to writethe the book.
I d don't know about it.
SPEAKER_04 (15:04):
I mean, you know, for Deb, in many ways, the the
process to start writing a bookwas uh was an act of defiance.
You know, it was I I still feellike an academic.
They're telling me I can't be atraditional academic, you know,
screw that.
I'm I'm gonna write a book.
And and candidly, when she firstsaid it, I thought she was nuts.
(15:28):
Yeah.
Um, because at that point, Imean, her speech was far less
good than it is now.
Um, and and but but it veryquickly, you know, as Deb
realized that the book shewanted to write was turning this
expertise she had aroundidentity as a lens on herself to
(15:49):
understand her recovery.
The book writing process veryquickly became first her
journey.
I I sometimes say it's the itwas the cheapest five years of
therapy we ever could haveembarked on because it really
was a therapeutic process forboth of us.
Um the five years it's so towrite the book and and and it
(16:17):
really was in the book writingprocess that Deb sort of
anchored on how importantmeaning and purpose is to
herself, but most people.
Yeah.
And that one of the things shewas suffering most was that
sense that the purpose she hadaround academia and creating
(16:40):
knowledge and teaching studentsand research, she had lost that.
But it was really important toher.
How could she recreate that in adifferent form?
And that's really what that'sreally what got her to push
through the frustration ofwriting the book to finish it.
Because there were a few timesshe was ready to throw in the
(17:01):
towel, um, understandably.
Um, but then also for for us tostart stroke onward because we
realized we had sort of stumbledon another way for Deb and us to
have meaning and purpose interms of of trying to advance
knowledge and improve, improvethe healthcare system for for
(17:24):
millions.
SPEAKER_00 (17:25):
Right.
I love that you took and youfigured out another way to
communicate.
Yeah.
I mean, that is just, you know,like you're saying about the
glass being three quarters full.
I mean, I I just love yourperspective.
And lots of times it does comedown to perspective when we are
living life and we have theselife-changing moments, and we
(17:48):
have to pivot, you know.
We just have to figure out howto pivot.
How could you talk more aboutthat to people who are maybe
they've had some kind of alife-altering event and they
have to pivot?
Yeah, yeah.
SPEAKER_01 (18:06):
Uh the stroke is uh one thing, and uh a uh old age
is the another thing, and thethe cancer is uh uh uh and uh
green injury and three uhsubjects uh in the book are
(18:30):
green injury, uh muss threethree and ALS.
Oh, okay.
SPEAKER_04 (18:39):
I I think you know, our lived experiences with
stroke, but we think that kindof what we've learned and what
we continue to learn is relevantto a much, much broader, it's
really is how do you rebuildafter a trauma that changes your
life?
And I think one of the things,and and we say this in the book,
(19:00):
is it's getting past, you know,very often we think of our
identities in the job we hold.
So Deb's a fifth grade Stanfordprofessor.
The real the real door openerwas trying to say, okay, what is
it about being a Stanfordprofessor that Deb really loves,
(19:23):
that Deb really findsmeaningful?
And we boiled that down tocreating and sharing knowledge.
That's why she went intoacademia in the first place.
So now if she can't be auniversity professor full-time,
given her current capabilities,is there some other way to
(19:43):
create and share knowledge?
And that was the opener to likesay, yeah, well, we now have
this really interestingcombination of skills and
experiences.
Deb as an expert on identity,you know, her lived experience
as a stroke survivor, mine as acare partner, my background
(20:05):
creating and running nonprofits.
Maybe there's a way we cancreate and share knowledge
together that's different thanacademia.
And so I think we're reallyhesitant to give advice because
everybody's situation isdifferent.
But the observation we have isthat very often people get stuck
(20:27):
in the what of their identityrather than the why of their
identity.
I agree.
And and that was a that was areal linchpin for us in moving
forward and creating newopportunity.
SPEAKER_00 (20:41):
Yeah.
Yeah, I agree.
And again, it's about beingwilling and giving yourself
permission to become somethingdifferent with what you already
have, what you already know.
You just built upon and becamedifferent and allowed yourself
to become different.
I mean, that's a reallybeautiful thing.
I think that that's such a goodlesson for people that come
(21:03):
across different things in lifethat all of a sudden it didn't
go the way that we planned.
SPEAKER_01 (21:07):
Yeah.
SPEAKER_00 (21:08):
You know, and that happened, that I mean, that's
life.
It really is.
SPEAKER_01 (21:12):
Twenty five people are in the book and no, and the
and care partners and friends ofYeah, just that in the process
of writing the book.
SPEAKER_04 (21:26):
It was funny because Deb people would say to Deb, Oh,
you're writing a memoir, and shewould say, No.
Um, and that's part of the shewas still an academic.
She didn't want to write a justa personal story.
She wanted research, she wantedto understand other people's
stories because she knew thather just one of many.
Um Deb was saying that, youknow, I think we interviewed
(21:49):
about 55 people in total, 25whom were survivors, and the
rest were members, carepartners, medical professionals,
etc.
Yes.
But you you used a word, if Ican.
You talked about giving yourselfpermission to be somebody
different.
Uh I think that word permissionis good in another sense,
(22:10):
because the other place where wefind people often don't want to
give themselves permission, butneed to, is the permission to
grieve.
SPEAKER_01 (22:19):
Yeah.
SPEAKER_04 (22:19):
That's you've you've lost something.
You've you've you could even sayyou've lost someone, you've lost
yourself.
Right.
And that deserves to be grieved.
Yeah.
And it's and like people talkabout in the context of losing
loved ones, you never finishgrieving.
(22:42):
Yeah.
You, you know, that's a lifelongprocess.
You're gonna miss that personforever.
Just like Deb is gonna miss herold capabilities and the person
she was with them forever.
Um but how do you how do yougive yourself that permission,
but not let it bog you down, notlet it become where you live all
(23:03):
the time.
Yeah.
Um, and so I I just I thoughtyour use of the word permission
is a um is a really importantone.
SPEAKER_00 (23:10):
Well, and it can be used like you're saying, in so
many ways.
And and we don't have to bebogged down by it.
And but being able to moveforward with it, I think is what
is so important.
Just being able to move forward,whatever that looks like.
And you guys did that and youdid it together.
(23:31):
And I love care partner.
One of the things I wanted toask you, Steve, was you know,
you're such a good care partnerto your wife.
Can you please talk about whatwas happening with you as you
watched your very strong wife gothrough this?
SPEAKER_04 (23:49):
Yeah, I mean, on a bunch of, I mean, one, it was
just painful to watch her haveto go through this and still is,
you know, just whenever thereare things that are driving her
crazy and when she's frustrated.
Um like early on, um, you know,just like I said, I'm an
optimist.
I'm gonna also just kind of I'velived my life solving problems.
(24:11):
And and so, you know, I was sortof it it fit my personality to
help.
And I've also said many times,if Deb hadn't been the fighter
that she was, I'm not sure Iwould have been a very good care
partner.
You know, I'm not, I'm not verygood at sort of dealing with
(24:32):
unhappiness and complacency.
And so if she had been a, youknow, a complaining stroke
survivor, I probably wouldn'thave been a very good partner
for her.
Um, but that's not who she is.
She's a fighter and she wasgonna do everything she could to
make, you know, to get betterand to make the best of it.
And so that that sort of playedwell into my personality.
(24:55):
I think, you know, I think theum the big thing for for care
partner, you know, for for myrole is making choices.
You know, it's sort of how doyou create a balance to be there
for the person you love, notgive up so much of who you are
and what you love to live inresentment.
(25:17):
Because then you become a badcare partner because, you know,
no relationship survivesresentment very long, very well.
And so it really was that.
I mean, I think a probably themost extreme example is when Deb
first decided to write a book.
I was about seven years intobuilding a nonprofit that I
(25:42):
cared deeply about.
And I wasn't willing to givethat up.
I knew that if I did, it wouldhave been a problem.
So we found, I helped with thefirst edition of the book, but
wasn't willing to kind of giveit the full-time effort.
I did it nights and weekends,but we found other help to make
that book writing processhelpful.
(26:03):
And, you know, I I think you mayknow that sort of it ended up
being our oldest son, who wasthe named call of the first
book.
Um, he played a big role.
He was between jobs and played abig role in in the final stages
of that book.
Um, but then when the book cameout and we decided to start
Stroke Onward, at that point, Ikind of was at a place in my
(26:26):
career and saw the opportunitywith Stroke Onward and our
complementary skills that atthat point I was willing to step
out of a leadership position atthat organization, hand it to
others and come back in.
So I think, you know, for me, abig part.
Um, I had I had people close tome give me good advice at the
(26:48):
very beginning, which is, youknow, Steve, if you don't stay
healthy physically andemotionally, yeah, you gotta
take care of you.
You can't be any help.
And so um, I think it's justalways, you know, and and that's
a struggle.
Finding the right balance is astruggle we still have today, 15
years later.
You know, Deb was an awesomeskier, racer, better skier than
(27:12):
I am.
We both loved skiing.
We lived a lot of our life withour kids.
It was like our our familypassion.
And now, through a combinationof the stroke, Deb did get back
on skis, um, but then broke herhip.
And the risk of skiing, she'sgiven up skiing.
(27:35):
So do I give it up?
Every time I go skiing withouther, it's painful.
I mean, I know it's painful, andyet she knows that there really
isn't a reason I can't take fiveor ten days a year and do
something that I love.
And so striking that balance ishard.
(27:55):
And, you know, we go through ourmoments around stuff like that.
But that's one of the reasonsyou mentioned um tandem and
cycling.
That's one of the reasonscycling hasn't become such a big
part of our life post-stroke.
We were both bicycle riders, butnow ride a tandem because it's
something we both love to do andcan still do together.
(28:16):
Um, so though it's choices thatthat we try to make.
SPEAKER_00 (28:20):
And you you so deeply care about each other and
what each other thinks.
You know, it sounds like eventhough you're moving on in some
respects, it's also you're youare doing it together, but it's
also painful as you try to makethese decisions.
I mean, I that that is reallybeautiful how you do everything.
I mean, it's just such anexample of what a husband and
(28:44):
wife should be.
Sometimes, yeah, yeah.
Well, you're allowed to haveyour problems.
Like anybody in in relationship,especially in spousal
relationships.
Um, I wanted to talk about thebook, and part of your book does
(29:06):
include your story, but it alsoincludes others, as you
mentioned earlier.
There are a lot of otherpeople's stories in there from a
a really young person all theway.
I mean, there are so many walksof life represented here.
What were some of the biggesttakeaways as you share other
(29:27):
people's stories whose bodieswere also very affected
unexpectedly and abruptly?
SPEAKER_01 (29:34):
I I have really a lot of takeaways.
15 years later, I am still uhgetting better.
And I am the phases is so didifficult.
Yeah.
SPEAKER_04 (29:54):
Yeah.
I mean, I I I think uh a bigpart of it is we we quote
somebody we heard say this once.
Um, when you've met one strokesurvivor, well, you've met one
stroke survivor.
Because of those issues of thedamage being a little bit
different for everyone, umeverybody's journey is
(30:14):
different.
And I think really two thingsthat were universally true of
everybody we interviewed for thebook.
One was people who keep workingat it keep getting there was
this trope in the medicalprofession that most of the
recovery happens in the firstsix to twelve months.
(30:35):
And while it is true that mostof the, you know, the fastest
improvement is in early on, itkeeps going.
And Deb's 15 years later andstill getting better.
Um, we we literally we went witha walk with friends just the
other day, and they said, Oh mygod, Deb, your gate is so much
(30:55):
better than it was when I sawyou three months ago.
Um and then the second is thateverybody goes through this
emotional that recovery isn'tjust rehabilitation.
It's the emotional journey, it'sthe rebuilding of identity, it's
the rebuilding of life, and thatthat's true for everyone we talk
(31:21):
to, and nobody gets help withit.
And that really was the genesisof starting stroke onward.
SPEAKER_01 (31:29):
And it the the families, the the the emotion uh
and uh friends and families andcare partners, the the book is
stroke is a family illness,yeah.
SPEAKER_04 (31:46):
Just that that it it it really does impact all the
people close to a survivor, notjust the survivor.
And and I think one of thethings that that you know we
talk about a lot is that is thatit doesn't just impact our
lives, it impacts our identitiestoo.
(32:07):
Yeah, you know, we becomedifferent people because of the
experience.
SPEAKER_00 (32:12):
Yeah, I mean, you just touched on one little the
skiing, you know, but I wouldimagine that that's just a small
part of your life that you hadto change.
Yeah.
Everything, you know, you didtalk about grief earlier, and
you mentioned about it's cyclesof grief, not just something
that you go through the stagesand then it's over.
(32:34):
It just keeps hitting you indifferent ways.
Could you talk about thosecycles and how they show up and
how you've learned to movethrough them more with grace?
SPEAKER_01 (32:45):
I am still learning.
My grandson is born, and I am sohappy, and I I am so uh uh sad.
It's it's it's yeah.
Yes, and I it's really the thethe grief is the so yeah.
SPEAKER_04 (33:13):
I mean the challenge that we've sort of discovered is
that it's very often in thehappiest moments when grief
comes pouring back in.
So, like Deb said, when when ourgrandson Nylan was born 15
months ago, that was just purechip.
SPEAKER_03 (33:30):
Yeah.
SPEAKER_04 (33:30):
And then the next morning, Deb was ready to take
my head off at every turn.
She was so frustrated becauseshe was thinking about all the
ways she couldn't be thegrandmother that she had always
envisioned being, you know,putting them to ski, putting him
to sail, things that sheprobably won't be able to do.
SPEAKER_01 (33:50):
And the the same diaper.
SPEAKER_04 (33:54):
Yeah, just you know, we're there trying to be helpful
to our son and daughter-in-law,and there are so many ways Deb
can't be helpful just becauseshe only has use of one arm.
And so what's safe, what's notsafe.
And so, you know, here in thehappiest of moments, the grief
comes pouring back in.
And how do you acknowledge it,that promotion again?
(34:17):
How do you acknowledge it, giveit space, but then get past it
by refocusing back on what'swonderful in the moment?
And you know, you you can'tavoid that grief because if you
tried to, it would mean avoidingall these really happy things,
and that that wouldn't be a goodway to live your life.
(34:38):
So it really is how do yourefocus yourself, acknowledge
it, say, yep, it sucks, maybehave a little pity party, find
somebody you can you can ventwith for a few minutes, but then
refocus back on.
But isn't it wonderful that wehere in New York with our brand
new grandson and you know, andand all the wonderful aspects of
(35:01):
it.
So that's that happens all thetime.
And and that's what we we sortof dubbed cycles of grief.
Uh-huh.
As as a it's just gonna be partof life for forever.
SPEAKER_00 (35:16):
I love how you allow yourself to do that cycle
though.
Yeah, you don't ignore it, youknow, you go through.
And that is really the only wayto get to the other side and to
grow from each time that cyclehits.
SPEAKER_01 (35:29):
Yeah.
SPEAKER_00 (35:30):
Yeah.
Speaking about cycling, um, youyou like you said, and you went
4,500 miles across the countrytogether?
I mean, together you guys didthat for stroke across America.
And I mean, that just wasn'tjust a trip.
(35:51):
I mean, that that's a big deal.
What inspired you to take thaton?
And what did you discover aboutyourselves and the stroke
community along the way?
And there was a documentary madeabout it, Stroke Across America
on PBS Inclusive Sports.
SPEAKER_01 (36:05):
Yeah, um, the the I really I love the the cycling
and the the stroke community is16 uh community events across
the country.
(36:25):
It's really a a lot of the workand so many people are craving
and and recovering.
SPEAKER_04 (36:35):
I mean, it was, you know, we probably we hosted
these 16 events, we probablyinteracted with a thousand or
more people, mostly survivorsand their families.
And and it just it justreinforced our belief that this
issue of rebuilding identity andthe emotional journey in
(36:57):
recovery is important and oftenoverlooked.
And then just just how inspiringpeople are who have kind of like
us, sort of figured figured outthis path on their own, and many
of whom are doing incrediblethings, it sort of increased our
(37:21):
resolve.
You know, we had founded StrokeOnward in 2019, but you know,
thought we'd keep it a prettysmall thing.
Um, and it it really made usthink that this needs to be
bigger.
There's more work to be done andlet us let us to recruit, you
know, given our age and becominggrandparents and wanting to slow
(37:42):
down a little bit.
Um, we knew that, you know,trying to really build a
nonprofit is a is a boatload ofwork, and we were probably a
little too old to take that ondirectly.
And so um, shortly after thetrip, we recruited an
experienced nonprofit CEO who'snow leading Stroke Onward so
that hopefully we can do more,build it into something bigger
(38:05):
and and make more of adifference.
SPEAKER_00 (38:07):
Yeah.
I want to talk about StrokeOnward, but before we do that, I
just want to like, what was yourmap across America?
I mean, like, what did you do?
How did and did you just likemake stops along the way and
meet people in the strokecommunity along the way?
SPEAKER_01 (38:24):
And the the 15 events uh across this country is
the uh sh we are the not moving.
SPEAKER_04 (38:36):
So, oh, rest days, um yeah, which we started to
call stress days.
Um the uh no, so the trip wasall planned out.
Yeah.
I mean, because we wereorganizing these events, we had
to know when we were gonna be ina place at a given time.
So we had a, you know, we had areschedule.
We hired somebody who is anexperienced bike trip organizer
(38:59):
and tour guide.
We had a support vehicle.
Um, we ended up inviting twoother survivors, one stroke
survivor, one brain injurysurvivor to ride with us.
Uh and then uh we ended up withtwo college student summaries
with us as well.
(39:20):
So there was sort of a coregroup of six that pretty much
rode all the way.
We always had a support driver,and we spent most nights in
campgrounds.
Our support vehicle was an RV.
Um, we kind of wanted to be alittle more comfortable.
So we we got to sleep in the RV.
(39:41):
We stayed in in motels everyonce in a while, um, kind of
when we needed to do laundry andand there wasn't a good
campground nearby.
But that was all planned out inadvance by somebody who had the
job of making sure all thatworked.
He and I kind of did the routetogether, but then it was his
his job.
And then he hired for part ofthe time, he was the support
(40:04):
driver.
And then at other times he hadstaff.
He and his wife run a smallbicycle tripping company.
So um um it was it was veryplanned out and it was it was
spectacular.
Riding cross country wassomething on my bucket list
since my one of my best friendsfrom college did it two years
after we graduated.
And so, you know, it was it wassomething we could do that was
(40:28):
something we wanted to dopersonally, but then we could
turn it into something to reallyhelp raise awareness and and
give the stroke onwardorganization a boost in its
visibility.
SPEAKER_01 (40:39):
And yeah, um so it rained a lot.
Really rained a rough one.
SPEAKER_00 (40:48):
But you just kept biking, huh?
Yeah, yeah, yeah.
You know, you you mentionedearlier, and I think that this
is all part of stroke onward.
So I would like you to talkabout all of this, is that you
talk about how stroke recovery,like you mentioned, isn't just
medical.
I mean, it's emotional,spiritual, relational, and the
(41:09):
system focuses on physicalrecovery, but not on rebuilding
identity and everything thatgoes into this.
Why do you think that that'sbeen overlooked?
And how can we change that?
Is that, I mean, is is strokeonward trying to change that?
SPEAKER_01 (41:27):
Yes, yeah, yeah.
SPEAKER_04 (41:28):
Yeah.
I mean, I think the why, youknow, this is just a hypothesis,
but you know, one, there's justnot enough mental health support
and emotional health support inour country, period.
Um, and it's often got stigmaattached to it.
People people brag about goingto the gym to work out to
preventatively help theirphysical health, but you don't
(41:50):
hear people you don't hearpeople bragging about the
wonderful counselor they have tojust check in and that that
seems to be changing a littlebit.
SPEAKER_00 (42:01):
That's interesting.
SPEAKER_04 (42:02):
Um, yeah the other thing is that that stroke grew
up in the critical care silos ofour medical system because it
starts as a criticalintervention.
SPEAKER_01 (42:13):
Yeah.
SPEAKER_04 (42:13):
And then it for everyone becomes a
rehabilitative intervention.
And by the time you know we tellthe story that Deb, for three
and a half years, Deb was just ahundred percent all about rehab
to get back to who she was.
And physical therapist thatheard our very first book talk
said, Hey, Deb, if I had triedto talk to you about what you
(42:37):
wrote about and talk about whenwe were working together a year
and a half after your stroke, Iwould have had a black eye,
bloody nose, back lip, or allthree, because you wouldn't have
wanted to about rebuilding adifferent life or getting your
old life back.
And so usually by the timepeople get to the place where
they really need that support,they're already disconnected
(42:59):
from the medical system.
Because unlike other chronicconditions like MS or ALS,
stroke isn't a deterioratingcondition.
Once you bottom out, you'restable.
You don't need that constantmedical care.
So you lose touch with mostaspects of the medical system.
So that's really what StrokeOnward is all about is trying to
(43:21):
figure out what additions orchanges to the medical system
could help people reconnect withthe kinds of support they need
when they need it.
And one of the challenges isthat everybody needs it at a
different time.
SPEAKER_03 (43:36):
Yeah.
SPEAKER_04 (43:37):
Some people get to that acceptance point of, okay,
my life's going to be differentnow.
What do I do in three months?
And some people it's threeyears, and some people it's 10
years.
So how do you connect them atthe right time?
And that really is what struckonwards working on.
SPEAKER_00 (43:54):
Yeah, you you did mention about how like
psychiatrists and psychologistsand social workers and those
types of people should beinvolved from the get-go.
Yeah, I agree.
I mean, you're you're working onyour physical self and like you
weren't ready for it, butsometimes those things just need
to be in place and help youthrough the journey.
(44:15):
And they are there when you wantor need them.
Yeah, I yeah, I agree.
SPEAKER_04 (44:20):
And of course, you then get into the whole ball of
wax of will insurance, if peoplehave insurance, will insurance
for it.
SPEAKER_00 (44:28):
Yeah.
And and that was another pointin your book that awareness
runs, you know, um, it'sunfortunate that recovery isn't
just personal, it's social.
And how do we make sure thateveryone, regardless of income
or zip code, has a fair shot atthe whole person recovery.
And what do we need to do forhealth equity?
SPEAKER_04 (44:51):
Equity is so a part of one of the reasons we chose
Liz Wilson, our CEO, is becauseshe's sort of lived her life
committed to issues of equity.
Um, her last big venture wasaround schools and access to
quality education for all kids,no matter their backgrounds.
(45:13):
And and um, you know, it's ait's a huge problem in our
country and certainly not onethat we're gonna solve.
But, you know, what we're tryingto do is as we think about the
changes that we might want totry to catalyze in the
healthcare system, that we tryto do it in such a way that it's
benefiting the broadest possibleswath of the population in need.
(45:38):
In fact, most notably those whohave the fewest resources.
Um and there is just there is noeasy answer.
And, you know, we're not sonaive as to think we're gonna
fix that whole, that wholeproblem, but we want to be very
conscious of it so that the workwe do doesn't just help and
(46:00):
improve the people with the bestaccess to medical care and the
most resources to self-fund ifthey need to, um, but rather,
you know, focus on how is itmost broadly available?
Um, everything, all theresources we've currently
created and disseminated are allavailable free to everyone so
(46:22):
that at least at that level,cost is not a barrier.
unknown (46:26):
Yeah.
SPEAKER_00 (46:27):
So people can just contact stroke onward after
somebody has a stroke, and thenyou provide these resources or
direct them where they need tobe.
SPEAKER_01 (46:38):
And and the the book guide is a phased, social work,
uh, or uh the NicoleProfessionals.
SPEAKER_04 (46:50):
On our website, um Deb was talking about book
discussion guides, and and we'vegot free downloadable.
So for particularly for peoplewith aphasia or speech
therapists who might want to doa book group.
Um, we've got some materialsthat make the book more
digestible, or even just, youknow, good old-fashioned Oprah
(47:10):
book group, um, sort ofsuggested questions to let a
broad group of people, even ifthey aren't directly connected
to stroke, think about theseissues of identity and
rebuilding.
Um, we've been told by peoplewho have been part of book
groups of a group of people kindof our age who are all
contemplating retirement, thatit was super helpful to think
(47:32):
about these issues in thatcontext.
Um, we have a new uh effort thatwas just launched on World
Stroke Day at the end of Octobercalled the Onward Community
Circle, or we abbreviate it SOC,SOCC, um, not SOCK, but we do
have a SOC drawer on theplatform.
(47:54):
And it's being built to be arobust, interactive platform for
survivors, care family members,care partners, uh, medical
professionals who are interestedin deepening the understanding
of these emotional journeyissues and helping to sort of
(48:15):
build the movement that candrive change.
So there are chat rooms andresources and live events uh on
this platform called SOC.
Um, and so yeah, we're trying touh get people who care about
this and and who need supportdirectly.
So stroke survivors who feelalone and disconnected can find
(48:38):
community.
Yeah.
Same for care partners andfamily members, same for medical
professionals who may think,God, our system just doesn't do
this well.
I wonder if there's anybodythinking about how to do it
better.
And our hope is to build a verybroad coalition of people who
can both support each other inan ever-evolving platform that
(49:01):
can take shape as the desireskind of reveal themselves, but
then also be part of a movementto say, okay, what change can we
really work toward to make it tomake it better?
Um, so that's that's one ofStroke Onward's biggest efforts
right now is the launch andbuilding of this platform called
(49:24):
called SA.
SPEAKER_00 (49:25):
It is so amazing that again, you are taking your
pain and putting it intopurpose, and you're creating
this website, strokeonward.org.
Is that correct?
SPEAKER_04 (49:38):
That's the website.
And on the website, there's alink to the the Stroke Onward
community circle, um, which isthe more interactive piece.
We didn't do that through thewebsite, we created a separate
platform.
SPEAKER_00 (49:52):
I mean, it's just brilliant.
You saw Need and you did it.
I mean, I you know, it's it'svery, very unfortunate that you
had this stroke in your lifetook this path.
But what is amazing about it isthat you took it and one of the
most profound things in yourbook, I just I loved it because
(50:17):
I love when people turn thingsinto something when they went
through something horrific.
We always talk about pain intopurpose on the podcast, and it
always circles back, like wesaid earlier, to perspective,
and you've turned thisexperience into purpose for
(50:39):
sure.
Instead of recreating a lesserversion of your old life, you've
integrated your new identitywith your old one, and you said
by embracing my stroke as partof my identity, I can now
explore and teach in new ways.
Yeah, yeah.
That was so profound to me.
(51:01):
I just sat in that for a whilebecause you know, you figured it
out.
You're teaching in new ways.
I mean, talk a little bit aboutthe process that brought you
there that and how you got herein ways that you never expected.
(51:23):
Yeah.
SPEAKER_04 (51:24):
I think I think when we first started, when the book
first came out, or even while wewere still writing the book, um
the aphasia community and theprofessionals, the incredible,
wonderful professionals, um,speech therapists who focus on
on supporting people withaphasia, and many of them are
university-based.
(51:44):
And so there's tons of greatresearch as well as clinical
programs, really kind of becausepeople with aphasia have so much
frustration as to how to rebuildtheir lives, that community
really embraced our thinking andour ideas early on and became
really important allies andmany, many good friends.
(52:07):
And and I think, you know,there's no question that when
you're faced with a trauma andyou're thinking about a
transition, get thatreinforcement that what you
might do would actually bereally, really welcomed and
appreciated and needed.
Um, that helps fuel purpose.
Yeah.
SPEAKER_01 (52:26):
And I think for Deb, it's the real a lot of the the
phase of classes, the Zoomclasses, and really a lot of
Zoom classes.
SPEAKER_04 (52:44):
Yeah, I mean, a number of speech therapy
professors have built the bookinto their curriculum, and we
often get invitations to cometalk to the class, mostly via
Zoom, because just practicallyspeaking, and that's
unbelievably rewarding to beable to talk to a group of 30
(53:05):
eager budding speech therapistswho are going to go out and help
people, and now we're able togive them this foundation so
that hopefully they do so withthe perspective of the broader
journey.
But and when the book came outand sort of looked at, okay,
what next?
We recognized that maybe there'san opportunity to do even more
(53:28):
that's meaningful.
And that led to the the creationof Stroke Onward.
SPEAKER_01 (53:33):
And the the lectures, I am I'd like to
teach.
SPEAKER_04 (53:41):
Yeah, one of the things Deb loves most about her
work at Stroke Onward is givingtalks, where through the
challenge of her communication,which obviously is significant,
um, she can still bring herunique perspective as an
identity scholar, an author, anda person with lived experience
(54:03):
of stroke and aphasia to help tohelp other people understand
something that maybe hearing itfrom an academic, uh a professor
in the field today doesn't landas sort of meaningfully as
hearing it from somebody withlived experience.
(54:25):
Yeah.
Right.
Right.
So, you know, that kind of thatkind of lecturing, um, which is
very different than a classroom,um, but but that's very
rewarding to Deb and incrediblyimpactful.
SPEAKER_00 (54:39):
Yeah.
You often talk about umindividuality and meeting
everyone where they are in yourbook.
And I say that all the timehere.
Uh, whether it's for a stroke ortrauma or grief or any other
kind of loss, every person'srecovery is so unique.
And the only way to help aperson is to meet them where
(55:00):
they are.
So I thought that I think thatthat's really amazing.
I want to switch gears here,though.
I want to ask you abouttechnology.
And you've written abouttechnology-driven adaptation,
communication aids, and howtools like AI can help survivors
rebuild identity andindependence.
Can you share how that'sunfolding and what gives you
(55:22):
hope about the future?
SPEAKER_01 (55:25):
Love and labs, the the the company, the Love and
Labs.
SPEAKER_04 (55:31):
Um Yeah, I mean, I so I mean, just three examples
of the way Deb is usingtechnology, um, both for
continued efforts torehabilitate, to gain more
capability, but also to um adaptto what she has.
11 Labs is uh an AI voicecompany based in London that
(55:57):
sort of the leader of creatingreplicating people's voices.
Um and lots of people talk aboutall the dangers of that because
of deep fakes and things likethat.
Sure.
In Deb's case, we were able toload into their software some
examples of talks she's given.
It's created uh an AI-drivenvoice that now we can enter a
(56:23):
script into the software and itwill speak with a voice that
isn't exactly Deb's, but it'spretty darn close.
SPEAKER_01 (56:32):
I agree.
SPEAKER_04 (56:32):
Um, and what that's let her do in a few situations
where she was giving longertalks to say, gosh, the amount
of time I have to spendpracticing to be able to give
the talk is immense.
SPEAKER_03 (56:46):
Wow.
SPEAKER_04 (56:46):
And it prevents me from doing other things that I
enjoy.
So we would take little piecesof the talk and put the script
into Eleven Labs and let we callDeb's AI voice Debatar.
Um and let let Debatar speak forher.
SPEAKER_00 (57:02):
Oh my gosh, that's so cool.
SPEAKER_04 (57:04):
It doesn't replace her voice, but it extends it and
it amplifies it.
SPEAKER_01 (57:09):
Um the the 11 labs is the the the impact the uh ALS
and Ruster.
SPEAKER_04 (57:21):
Yeah, they have uh they have something they call
their impact program, which isto give a million a million
people their voices back.
And so they're part ofnonprofits.
We have a partnership withStroke Onward.
Um, if anybody who joins ourcommunity circle that has a
speech impairment can get a freelicense of their software
through a partnership that we'veformed with them, and they've
(57:44):
done that with others, and theirgoal is to provide a million
free licenses worldwide toregain their voice.
Um, another one that Deb uses isuh something called a neural
sleeve, which is like a neoprenesleeve that goes over her leg
that has sensors in it anduh-driven brain that knows what
(58:11):
her gait is supposed to be likeand stimulates the muscles that
should be firing that her brainmay not be telling to fire.
So it's uh it's a uh a rehabtool that Deb is using again, 15
years after her stroke to try tocontinue to improve her walking
(58:33):
capabilities.
SPEAKER_01 (58:34):
And is the three days ago.
SPEAKER_04 (58:43):
Oh yeah.
When when I mentioned somebodycommented how how much better
she was walking, oh yeah, Debwas using this device to um to
to to help.
And then a third one is acompany uh called
Microtransponder that has aproduct called Vivistem that was
recently approved by the FDA,um, which is uh um it's an
(59:07):
implant.
It's kind of like a pacemaker,but instead of hooking it up to
the heart, it's hooked up to thevagus nerve.
It stimulates the vagus nerve.
And they're data that if you dointensive therapy while
stimulating the vagus nerve, itimproves the brain's ability to
(59:27):
rewire itself and learn.
So they've got FDA approval toplant the device and then have a
regimen, a six-week regimen ofintensive physical therapy.
And Deb is looking at havingthat surgery to see if she can
regain functional use of herright arm.
(59:47):
Um, and so and the the the thetandem, the the the sweat the
the Oh, there's another anothercompany and another product, Deb
has.
Has tried is a company called InTandem that has um a music.
They basically put a sensor onyour on your shoe um to to
(01:00:12):
detect the gate rhythm and thenit selects music with that gate
pace to try to encourage you towalk more consistently at the
gate that your mental therapisthas said is the best gate for
you and your rehab.
So I think the idea is that thatthere's such an overlap because
(01:00:36):
hope is such a powerful thingthat while we don't focus on
rehabilitation per se, theintersection between these new
tech-driven you know, is it arehab device or is it an
adaptive device?
That line is blurry.
And if it gives people hope thatthey can continue to live a
(01:01:00):
fuller, better life, then itimproves their mental state and
their emotions.
And that translates into otheraspects of their life.
So we see a lot of um of greatopportunity.
Um, you know, and and in fact,we think with Stroke Onward, one
(01:01:21):
of the places is creatingpartnerships with these kinds of
companies to really um help themaccess the people they're trying
to reach and also get input frompeople with lived experiences to
develop and refine theseproducts is a real, a real
(01:01:42):
opportunity for us.
SPEAKER_00 (01:01:44):
I mean, this is so inspiring to me to hear how
innovation and humanity can worktogether.
I mean, you know, you hear somany negative things about AI
and different things like that,but this is just, I mean, it can
be used for such good.
SPEAKER_03 (01:02:00):
Yeah.
SPEAKER_00 (01:02:01):
But you both are living proof that rebuilding
identity isn't about going back.
It's about growing forward.
So as we close, I just want toask you one more thing because
this is who you are.
Um, you've said that thisjourney has been about finding
new ways to do the things thatmatter, to keep meaning, joy,
(01:02:24):
and connection alive, maybe uhlaughing deeper and you know,
more connection and having moretime and those kind of things.
After all these years withpatience, partnership, and
purpose together, what doesliving in tandem mean to you
now?
SPEAKER_01 (01:02:43):
Stroke onward is really trying to do something
something cool.
SPEAKER_00 (01:02:57):
So you stroke onward is basically living in tandem
with people that have hadstrokes and their families.
Yeah.
SPEAKER_04 (01:03:03):
Yeah, and I think, I mean, I think about it from a
relationship perspective, andyou know, it's just it's just
doing doing the hard work tostay in balance and deal with
what sucks and celebrate what'sgreat and do it in a way that
ultimately works for both of us.
(01:03:24):
And you know, neither of usfeels like a burden and neither
of us resents.
And see.
And it's really no, you know, Imean, I sometimes I say, this
has got nothing to do with beingstroke survivor and care
partner.
This is what relationshipsthat's just it's that's all.
This maybe got a little bit moredifficult because disabilities
create an imbalance to what wewere used to.
(01:03:46):
And um, and we just we have tolean into that and not let it
drive us apart, but find ways toto to work to work on it
together.
And I guess, you know, thetandem, the tandem example, we
gotta we gotta pedal at the sametime.
If we don't, we don't goanywhere.
SPEAKER_00 (01:04:08):
Can they uh can people get to your book through
your website?
Is it everywhere?
SPEAKER_01 (01:04:15):
I mean, how do they reach you just through
strokeonward.org and go toAmazon for your book or the and
the the the the Amazon that thethe audiobook is out.
SPEAKER_04 (01:04:34):
Yeah, so and there's a page on our website that has
links to four or five majorresellers.
It's at most of the online somebookstores.
Um the audio book is actuallybeing distributed by a really
cool startup company calledAudio Brerie.
Um, it's available at all themajor audiobook, you know,
(01:04:56):
places, audible and whatnot, butit's also available at
Audiobrerie, um, which is a uh astartup that really celebrates
narrators and their role inbringing media out.
Um that's great.
Well, you can get to all of thatfrom the website um at
www.strokeonward.org.
(01:05:17):
Um, and then just look for thebook and and it's all there.
SPEAKER_00 (01:05:21):
Yeah.
Well, Deborah Meyerson and SteveZuckerman, thank you for
reminding us that while identitycan be shaken, it can also be
rebuilt, that love can beredefined, and that even when
life changes in ways we neverimagined, we can still move
forward together.
Their book, Identity Theft,Rediscovering Ourselves After
(01:05:43):
Stroke, second edition, isavailable now.
And I encourage every listenerto check out Stroke Onward, the
nonprofit they co-founded tosupport stroke survivors and
families.
This has been Life in Tandem,and I had to name it that
because a story of courage,connection, and the endless
capacity to begin again.
(01:06:04):
And Deborah, you show us thatlife is not over after a major
event like a stroke.
You are not done.
You are becoming.
Remember, there is purpose inthe pain and there is hope in
the journey.
I am Anne from Real Talk withTina and Anne, and we will see
you next time.
Welcome to Real Talk with Tina and Anne.
I am Anne, and today's episodeis called Life in Tandem for a
Reason.
And I named it that because thisis a partnership with
perseverance and purpose afterlife took an unexpected turn.
My guests are Deborah Meyerson.
(00:30):
She was a former tenuredStanford professor, and Steve
Zuckerman, her husband and carepartner.
Together they co-authoredIdentity Theft: Rediscovering
Ourselves After Stroke.
And this is the second edition.
And they have founded thenonprofit Stroke Onward to
support stroke survivors andfamilies, and they help
(00:51):
survivors rebuild not justphysical strength, but a sense
of self.
Deborah's 2010 stroke changedeverything for her and her
husband and her families, hercareer, her independence, even
her voice, but not herdetermination.
And together, Deborah and Stevehave redefined what it means to
(01:14):
live and love in the aftermathof trauma.
Deborah and Steve, thank you somuch for being here today.
Thank you.
Thanks for having us.
Let's start at the beginning.
You wrote that sometimes wethink life will go one way.
And then we realize that ourplans were not going to happen.
(01:35):
I mean, you were a tenuredStanford professor and it didn't
go the way that you planned atall.
You at first thought your strokewas a blip, but it turned out to
be extremely life-altering.
Can you take us back to thatLabor Day weekend in 2010?
(01:56):
What happened?
SPEAKER_01 (01:58):
Uh the for six months before the stroke, I had
a really headache, really severeheadache.
I am so uh the the doctorsdidn't know, and the the
(02:22):
neurologists didn't know.
Yeah.
SPEAKER_04 (02:25):
Want me to help a little?
Yeah.
Yeah.
So so Deb had had some symptoms,but went through all the testing
you would go through and theydidn't find anything.
On that Labor Day weekend, wewere actually headed to the
mountains to Lake Tahoe with twoof our three kids and a friend
and our dog.
And Deb's leg just startedacting funny.
(02:48):
It didn't hurt, um, but it waskind of buckling a little bit at
certain times.
Deb being Deb was, yeah, don'tworry about it.
It's gonna be fine.
And we went off.
And to make a long story short,um, after a hike and a dinner
and Deb sleeping overnight, um,she asked for some aspirin and
(03:10):
had trouble reaching for it withher right hand.
And somewhere I had heard thatif you're having trouble on one
side of the body, arm and leg,that could be a sign of a
stroke.
And so with the leg whackingfunny and the arm not working,
we just got her straight to ahospital.
(03:31):
Uh and and that that began anunwanted journey.
Yes.
Um that was very quickly,quickly diagnosed as a stroke.
Um, and uh and and you mentionedthat sort of we thought of it as
a blip.
Yeah.
Um, I'm a I'm an optimist bynature, you know, every cup is
(03:52):
three-quarters full.
Um and Deb is a workhorse.
And, you know, even after thedevastating impact, and you
know, immediately following thestroke, about 24 hours after the
first symptoms of the stroke,Deb was fully paralyzed on the
right side, had no voicewhatsoever, couldn't get a sound
(04:15):
out.
You know, she got into therapy,you know, two months in the
hospital, lots of complexity.
But when she finally got intotherapy, things were improving.
And we just thought, you know,with access to good therapy and
the work ethic that Deb has,eventually we'd get back to life
as we knew it.
But that said, um, you know, thebody and and health had
(04:38):
different plans and and Debstill lives while she's
recovered a tremendous amount ofcapability.
Um, she still lives withdisabilities and particularly
the aphasia, which is acommunication disorder, yeah,
um, made it impossible for herto go back to to being a
full-time professor.
SPEAKER_01 (04:56):
Uh I am still uh professor.
SPEAKER_00 (05:03):
Oh, you are?
Yeah, yeah, yeah, yeah.
Oh, that's amazing.
That's great.
SPEAKER_04 (05:08):
No, I think being part of that community is is
really important.
Uh kind of our work withStanford now is more with people
in the med school uh because ofour work around stroke and with
stroke onward.
Uh but Deb still maintains heraffiliation with the School of
Education, um, even though she'snot actively engaged in that, in
(05:30):
that kind of academia anymore.
SPEAKER_00 (05:33):
Okay.
Well, you know what?
That's amazing that you canstill keep that community.
SPEAKER_01 (05:38):
Yeah, yeah.
SPEAKER_00 (05:39):
Yeah, I agree.
SPEAKER_01 (05:40):
Yeah.
SPEAKER_00 (05:41):
You also you just mentioned aphasia.
Could you talk more aboutexactly what that is?
I mean, I've known some peoplethat have had that.
And I also know of some peoplethat, you know, with lots of
disabilities, and you almostfeel sometimes that you're
trapped.
Um, can you talk more aboutthat?
SPEAKER_01 (06:01):
Speech is really important.
It's uh and it's two one yearafter my stroke, I have no
speech at all.
Really little speech.
Wow.
And I am it's um really hard touh be the the f professor of the
(06:28):
organizational behavior.
Three years after my stri uh uhs joke, I uh really had um
knowed uh my dean of the edgeschool.
SPEAKER_04 (06:44):
Nobody helped?
SPEAKER_01 (06:45):
Yeah.
SPEAKER_04 (06:50):
Stanford has a policy that says if you can't
return to your job after threeyears of medical leave, you
know, they need to full positionwith someone else.
And and that was, you know, thatwas sort of we we sometimes call
that trauma number two becausethat was sort of what forced us
to realize that life would bedifferent.
You asked about aphasia and umI, you know, that it's a it's a
(07:14):
communication disorder.
It's not just a speech disorder.
So for Deb, aphasia can takemany different forms or have
many different ramifications.
For Deb, hers is what's calledexpressive aphasia, where she
has thoughts clear in her mind,but being able to get them out
either through words or shedoesn't have use of her right
(07:37):
hand, she can type with herleft.
But the same, you know, again,it's not a speech challenge,
it's a communication challenge.
So the same difficulty findingwords to speak is true finding
words to type as well.
There are other forms ofaphasia, like fluent aphasia,
where people say very fluently,but often the words that come
(07:59):
out aren't the words they mean.
So the meaning isn't there.
There's also something calledreceptive aphasia, which, you
know, even for us, it's hard tounderstand how frustrating that
would be, where the hearing isfine.
So the sound is getting into thethe ears, and but the brain's
not processing it.
(08:20):
So you hear sounds, but theymean nothing to you.
So these are all different formsof aphasia or different
manifestations of aphasia.
And aphasia, about a third ofall stroke survivors suffer some
kind of aphasia.
And then there are other causesof aphasia as well.
(08:41):
But stroke, stroke is theleading cause of aphasia.
SPEAKER_01 (08:44):
And uh the um Gabby Gifford is uh the the gun uh the
gun.
SPEAKER_04 (08:54):
She has the the the Gabby Giffords, who's the
Congresswoman from Arizona whoRight.
SPEAKER_00 (09:01):
I know who she is, yeah.
SPEAKER_04 (09:02):
And and her aphasia is very similar to Deb's, even
though um it very differentcause, you know, very different
kind of injury to the brain, butclearly and that's one of the
things about aphasia, but alsoabout stroke more broadly, is
the brain is so complicated.
(09:23):
And, you know, just if theinjury to the brain, whether
it's caused by a stroke or by agunshot wound, if that injury is
just, you know, a millimeter tothe left or a millimeter to the
right, the disabilities that itcreates could be dramatically
different because, you know,just different parts of the
brain control, you know, it'sit's the nerve center or the the
(09:46):
control center for so much ofour really all of our bodily
action.
So depending on what part isdamaged, that's that's what
creates very, very different uheffects of a stroke.
SPEAKER_00 (09:58):
You spent two months in four hospitals and came out
unable to speak like you'retalking about.
And for a professor whose lifewas built on words, you know.
I mean, that must have been oneof the hardest parts for this.
I mean, your life was teachingand making a difference at
(10:19):
Stanford, and your loss ofidentity was a theme that is
woven throughout your story andothers.
So many times what we do, youknow, is our mission.
That's what who we are.
And you said I was stillthinking like a social
scientist, but my body justwouldn't do what I needed it to
do.
(10:39):
Could you talk more about thatloss of identity?
SPEAKER_01 (10:42):
I am still the the same person, and the the I am
not the same person.
SPEAKER_04 (10:54):
It's still it's the the the body is the identity is
uh central to my w what I liketo say is that is that and there
are lots of like funny anecdotesof how we discovered even very
early after the stroke, despiteDeb's inability to talk at all
(11:17):
or move her right side, thatthat the Deb we knew was still
inside.
Um and so in a lot of ways, shereally is still the same person,
same same worth ethic, sameideas, same values, but her
ability to express all of thathas changed because she has both
physical disabilities and mostconsequentially the aphasia that
(11:41):
affects her communication.
And when Deb said, you know, soin some ways I'm still the same
person, yes, can't necessarilylive out that person the same
way, and that is a frustrationthat Deb lives every day.
SPEAKER_00 (11:57):
Yeah, uh three times a day.
I'm so sorry for that.
I mean, that must really befrustrating.
You know, I was a as a kid, Ihave autism, and so as a kid, it
was very difficult for me tospeak.
It's taken me, it took me yearsto develop my speech and to get
(12:19):
where I am.
I understand a little bit ofwhat it feels like for your
brain to be saying all thesethings, but it's not coming out.
And it is very frustrating.
So I am sorry that you are goingthrough that.
Well uh 15 years ago is it'sreally long time.
SPEAKER_04 (12:40):
Yeah.
Yeah, no, but then but then asDeb said, but there are ways in
which she's a different person.
And you know, right, everybody'sidentity changes with more life
experiences.
SPEAKER_01 (12:53):
And I am a grandmother.
SPEAKER_04 (12:58):
That's a great new identity.
SPEAKER_00 (13:00):
That that's amazing.
Yes, that's a beautifulidentity.
SPEAKER_04 (13:04):
You know, there while she's incredibly
frustrated, she's also a morepatient person now than she was.
She was forced to be.
And so there are ways in which,and that's one of the themes of
the book and our is we hate theexpression silver lining, we
just don't like it because itdoesn't feel very silver.
(13:26):
But um, but there's a theorycalled post-traumatic growth.
There are ways that when you'vesuffered something horrible,
terrible, you can find ways togrow in the aftermath.
And I think that's one of thethings that I jokingly say to
Deb when she's incrediblyfrustrated, you know, there's a
really good book out there.
(13:46):
You should read it again.
Um, the one thing to understand,and it's another thing to to
live it.
It's oh, sure.
SPEAKER_00 (13:56):
Yeah.
I mean, when you you talkedabout this earlier, but when you
lost your position at Stanford,and you know, it's it's really
amazing what you guys did withthat because there are levels of
loss, but you did turn itaround.
And like you're saying, you tooka positive spin on it.
And you wrote the first editionof identity theft, and now you
(14:21):
have just released the secondedition, and you have a mission
to help others.
So taking your pain and turningit into purpose is a beautiful
thing.
Can you talk about where howthat transition that you took
and how you got to being able tojust say, you know what?
We're gonna sit down, we'regonna write this book, and we're
(14:42):
going to help others.
SPEAKER_01 (14:44):
Three and a half years after my stroke, I am
really depressed.
And I am the I am going to writethe the book.
I d don't know about it.
SPEAKER_04 (15:04):
I mean, you know, for Deb, in many ways, the the
process to start writing a bookwas uh was an act of defiance.
You know, it was I I still feellike an academic.
They're telling me I can't be atraditional academic, you know,
screw that.
I'm I'm gonna write a book.
And and candidly, when she firstsaid it, I thought she was nuts.
(15:28):
Yeah.
Um, because at that point, Imean, her speech was far less
good than it is now.
Um, and and but but it veryquickly, you know, as Deb
realized that the book shewanted to write was turning this
expertise she had aroundidentity as a lens on herself to
(15:49):
understand her recovery.
The book writing process veryquickly became first her
journey.
I I sometimes say it's the itwas the cheapest five years of
therapy we ever could haveembarked on because it really
was a therapeutic process forboth of us.
Um the five years it's so towrite the book and and and it
(16:17):
really was in the book writingprocess that Deb sort of
anchored on how importantmeaning and purpose is to
herself, but most people.
Yeah.
And that one of the things shewas suffering most was that
sense that the purpose she hadaround academia and creating
(16:40):
knowledge and teaching studentsand research, she had lost that.
But it was really important toher.
How could she recreate that in adifferent form?
And that's really what that'sreally what got her to push
through the frustration ofwriting the book to finish it.
Because there were a few timesshe was ready to throw in the
(17:01):
towel, um, understandably.
Um, but then also for for us tostart stroke onward because we
realized we had sort of stumbledon another way for Deb and us to
have meaning and purpose interms of of trying to advance
knowledge and improve, improvethe healthcare system for for
(17:24):
millions.
SPEAKER_00 (17:25):
Right.
I love that you took and youfigured out another way to
communicate.
Yeah.
I mean, that is just, you know,like you're saying about the
glass being three quarters full.
I mean, I I just love yourperspective.
And lots of times it does comedown to perspective when we are
living life and we have theselife-changing moments, and we
(17:48):
have to pivot, you know.
We just have to figure out howto pivot.
How could you talk more aboutthat to people who are maybe
they've had some kind of alife-altering event and they
have to pivot?
Yeah, yeah.
SPEAKER_01 (18:06):
Uh the stroke is uh one thing, and uh a uh old age
is the another thing, and thethe cancer is uh uh uh and uh
green injury and three uhsubjects uh in the book are
(18:30):
green injury, uh muss threethree and ALS.
Oh, okay.
SPEAKER_04 (18:39):
I I think you know, our lived experiences with
stroke, but we think that kindof what we've learned and what
we continue to learn is relevantto a much, much broader, it's
really is how do you rebuildafter a trauma that changes your
life?
And I think one of the things,and and we say this in the book,
(19:00):
is it's getting past, you know,very often we think of our
identities in the job we hold.
So Deb's a fifth grade Stanfordprofessor.
The real the real door openerwas trying to say, okay, what is
it about being a Stanfordprofessor that Deb really loves,
(19:23):
that Deb really findsmeaningful?
And we boiled that down tocreating and sharing knowledge.
That's why she went intoacademia in the first place.
So now if she can't be auniversity professor full-time,
given her current capabilities,is there some other way to
(19:43):
create and share knowledge?
And that was the opener to likesay, yeah, well, we now have
this really interestingcombination of skills and
experiences.
Deb as an expert on identity,you know, her lived experience
as a stroke survivor, mine as acare partner, my background
(20:05):
creating and running nonprofits.
Maybe there's a way we cancreate and share knowledge
together that's different thanacademia.
And so I think we're reallyhesitant to give advice because
everybody's situation isdifferent.
But the observation we have isthat very often people get stuck
(20:27):
in the what of their identityrather than the why of their
identity.
I agree.
And and that was a that was areal linchpin for us in moving
forward and creating newopportunity.
SPEAKER_00 (20:41):
Yeah.
Yeah, I agree.
And again, it's about beingwilling and giving yourself
permission to become somethingdifferent with what you already
have, what you already know.
You just built upon and becamedifferent and allowed yourself
to become different.
I mean, that's a reallybeautiful thing.
I think that that's such a goodlesson for people that come
(21:03):
across different things in lifethat all of a sudden it didn't
go the way that we planned.
SPEAKER_01 (21:07):
Yeah.
SPEAKER_00 (21:08):
You know, and that happened, that I mean, that's
life.
It really is.
SPEAKER_01 (21:12):
Twenty five people are in the book and no, and the
and care partners and friends ofYeah, just that in the process
of writing the book.
SPEAKER_04 (21:26):
It was funny because Deb people would say to Deb, Oh,
you're writing a memoir, and shewould say, No.
Um, and that's part of the shewas still an academic.
She didn't want to write a justa personal story.
She wanted research, she wantedto understand other people's
stories because she knew thather just one of many.
Um Deb was saying that, youknow, I think we interviewed
(21:49):
about 55 people in total, 25whom were survivors, and the
rest were members, carepartners, medical professionals,
etc.
Yes.
But you you used a word, if Ican.
You talked about giving yourselfpermission to be somebody
different.
Uh I think that word permissionis good in another sense,
(22:10):
because the other place where wefind people often don't want to
give themselves permission, butneed to, is the permission to
grieve.
SPEAKER_01 (22:19):
Yeah.
SPEAKER_04 (22:19):
That's you've you've lost something.
You've you've you could even sayyou've lost someone, you've lost
yourself.
Right.
And that deserves to be grieved.
Yeah.
And it's and like people talkabout in the context of losing
loved ones, you never finishgrieving.
(22:42):
Yeah.
You, you know, that's a lifelongprocess.
You're gonna miss that personforever.
Just like Deb is gonna miss herold capabilities and the person
she was with them forever.
Um but how do you how do yougive yourself that permission,
but not let it bog you down, notlet it become where you live all
(23:03):
the time.
Yeah.
Um, and so I I just I thoughtyour use of the word permission
is a um is a really importantone.
SPEAKER_00 (23:10):
Well, and it can be used like you're saying, in so
many ways.
And and we don't have to bebogged down by it.
And but being able to moveforward with it, I think is what
is so important.
Just being able to move forward,whatever that looks like.
And you guys did that and youdid it together.
(23:31):
And I love care partner.
One of the things I wanted toask you, Steve, was you know,
you're such a good care partnerto your wife.
Can you please talk about whatwas happening with you as you
watched your very strong wife gothrough this?
SPEAKER_04 (23:49):
Yeah, I mean, on a bunch of, I mean, one, it was
just painful to watch her haveto go through this and still is,
you know, just whenever thereare things that are driving her
crazy and when she's frustrated.
Um like early on, um, you know,just like I said, I'm an
optimist.
I'm gonna also just kind of I'velived my life solving problems.
(24:11):
And and so, you know, I was sortof it it fit my personality to
help.
And I've also said many times,if Deb hadn't been the fighter
that she was, I'm not sure Iwould have been a very good care
partner.
You know, I'm not, I'm not verygood at sort of dealing with
(24:32):
unhappiness and complacency.
And so if she had been a, youknow, a complaining stroke
survivor, I probably wouldn'thave been a very good partner
for her.
Um, but that's not who she is.
She's a fighter and she wasgonna do everything she could to
make, you know, to get betterand to make the best of it.
And so that that sort of playedwell into my personality.
(24:55):
I think, you know, I think theum the big thing for for care
partner, you know, for for myrole is making choices.
You know, it's sort of how doyou create a balance to be there
for the person you love, notgive up so much of who you are
and what you love to live inresentment.
(25:17):
Because then you become a badcare partner because, you know,
no relationship survivesresentment very long, very well.
And so it really was that.
I mean, I think a probably themost extreme example is when Deb
first decided to write a book.
I was about seven years intobuilding a nonprofit that I
(25:42):
cared deeply about.
And I wasn't willing to givethat up.
I knew that if I did, it wouldhave been a problem.
So we found, I helped with thefirst edition of the book, but
wasn't willing to kind of giveit the full-time effort.
I did it nights and weekends,but we found other help to make
that book writing processhelpful.
(26:03):
And, you know, I I think you mayknow that sort of it ended up
being our oldest son, who wasthe named call of the first
book.
Um, he played a big role.
He was between jobs and played abig role in in the final stages
of that book.
Um, but then when the book cameout and we decided to start
Stroke Onward, at that point, Ikind of was at a place in my
(26:26):
career and saw the opportunitywith Stroke Onward and our
complementary skills that atthat point I was willing to step
out of a leadership position atthat organization, hand it to
others and come back in.
So I think, you know, for me, abig part.
Um, I had I had people close tome give me good advice at the
(26:48):
very beginning, which is, youknow, Steve, if you don't stay
healthy physically andemotionally, yeah, you gotta
take care of you.
You can't be any help.
And so um, I think it's justalways, you know, and and that's
a struggle.
Finding the right balance is astruggle we still have today, 15
years later.
You know, Deb was an awesomeskier, racer, better skier than
(27:12):
I am.
We both loved skiing.
We lived a lot of our life withour kids.
It was like our our familypassion.
And now, through a combinationof the stroke, Deb did get back
on skis, um, but then broke herhip.
And the risk of skiing, she'sgiven up skiing.
(27:35):
So do I give it up?
Every time I go skiing withouther, it's painful.
I mean, I know it's painful, andyet she knows that there really
isn't a reason I can't take fiveor ten days a year and do
something that I love.
And so striking that balance ishard.
(27:55):
And, you know, we go through ourmoments around stuff like that.
But that's one of the reasonsyou mentioned um tandem and
cycling.
That's one of the reasonscycling hasn't become such a big
part of our life post-stroke.
We were both bicycle riders, butnow ride a tandem because it's
something we both love to do andcan still do together.
(28:16):
Um, so though it's choices thatthat we try to make.
SPEAKER_00 (28:20):
And you you so deeply care about each other and
what each other thinks.
You know, it sounds like eventhough you're moving on in some
respects, it's also you're youare doing it together, but it's
also painful as you try to makethese decisions.
I mean, I that that is reallybeautiful how you do everything.
I mean, it's just such anexample of what a husband and
(28:44):
wife should be.
Sometimes, yeah, yeah.
Well, you're allowed to haveyour problems.
Like anybody in in relationship,especially in spousal
relationships.
Um, I wanted to talk about thebook, and part of your book does
(29:06):
include your story, but it alsoincludes others, as you
mentioned earlier.
There are a lot of otherpeople's stories in there from a
a really young person all theway.
I mean, there are so many walksof life represented here.
What were some of the biggesttakeaways as you share other
(29:27):
people's stories whose bodieswere also very affected
unexpectedly and abruptly?
SPEAKER_01 (29:34):
I I have really a lot of takeaways.
15 years later, I am still uhgetting better.
And I am the phases is so didifficult.
Yeah.
SPEAKER_04 (29:54):
Yeah.
I mean, I I I think uh a bigpart of it is we we quote
somebody we heard say this once.
Um, when you've met one strokesurvivor, well, you've met one
stroke survivor.
Because of those issues of thedamage being a little bit
different for everyone, umeverybody's journey is
(30:14):
different.
And I think really two thingsthat were universally true of
everybody we interviewed for thebook.
One was people who keep workingat it keep getting there was
this trope in the medicalprofession that most of the
recovery happens in the firstsix to twelve months.
(30:35):
And while it is true that mostof the, you know, the fastest
improvement is in early on, itkeeps going.
And Deb's 15 years later andstill getting better.
Um, we we literally we went witha walk with friends just the
other day, and they said, Oh mygod, Deb, your gate is so much
(30:55):
better than it was when I sawyou three months ago.
Um and then the second is thateverybody goes through this
emotional that recovery isn'tjust rehabilitation.
It's the emotional journey, it'sthe rebuilding of identity, it's
the rebuilding of life, and thatthat's true for everyone we talk
(31:21):
to, and nobody gets help withit.
And that really was the genesisof starting stroke onward.
SPEAKER_01 (31:29):
And it the the families, the the the emotion uh
and uh friends and families andcare partners, the the book is
stroke is a family illness,yeah.
SPEAKER_04 (31:46):
Just that that it it it really does impact all the
people close to a survivor, notjust the survivor.
And and I think one of thethings that that you know we
talk about a lot is that is thatit doesn't just impact our
lives, it impacts our identitiestoo.
(32:07):
Yeah, you know, we becomedifferent people because of the
experience.
SPEAKER_00 (32:12):
Yeah, I mean, you just touched on one little the
skiing, you know, but I wouldimagine that that's just a small
part of your life that you hadto change.
Yeah.
Everything, you know, you didtalk about grief earlier, and
you mentioned about it's cyclesof grief, not just something
that you go through the stagesand then it's over.
(32:34):
It just keeps hitting you indifferent ways.
Could you talk about thosecycles and how they show up and
how you've learned to movethrough them more with grace?
SPEAKER_01 (32:45):
I am still learning.
My grandson is born, and I am sohappy, and I I am so uh uh sad.
It's it's it's yeah.
Yes, and I it's really the thethe grief is the so yeah.
SPEAKER_04 (33:13):
I mean the challenge that we've sort of discovered is
that it's very often in thehappiest moments when grief
comes pouring back in.
So, like Deb said, when when ourgrandson Nylan was born 15
months ago, that was just purechip.
SPEAKER_03 (33:30):
Yeah.
SPEAKER_04 (33:30):
And then the next morning, Deb was ready to take
my head off at every turn.
She was so frustrated becauseshe was thinking about all the
ways she couldn't be thegrandmother that she had always
envisioned being, you know,putting them to ski, putting him
to sail, things that sheprobably won't be able to do.
SPEAKER_01 (33:50):
And the the same diaper.
SPEAKER_04 (33:54):
Yeah, just you know, we're there trying to be helpful
to our son and daughter-in-law,and there are so many ways Deb
can't be helpful just becauseshe only has use of one arm.
And so what's safe, what's notsafe.
And so, you know, here in thehappiest of moments, the grief
comes pouring back in.
And how do you acknowledge it,that promotion again?
(34:17):
How do you acknowledge it, giveit space, but then get past it
by refocusing back on what'swonderful in the moment?
And you know, you you can'tavoid that grief because if you
tried to, it would mean avoidingall these really happy things,
and that that wouldn't be a goodway to live your life.
(34:38):
So it really is how do yourefocus yourself, acknowledge
it, say, yep, it sucks, maybehave a little pity party, find
somebody you can you can ventwith for a few minutes, but then
refocus back on.
But isn't it wonderful that wehere in New York with our brand
new grandson and you know, andand all the wonderful aspects of
(35:01):
it.
So that's that happens all thetime.
And and that's what we we sortof dubbed cycles of grief.
Uh-huh.
As as a it's just gonna be partof life for forever.
SPEAKER_00 (35:16):
I love how you allow yourself to do that cycle
though.
Yeah, you don't ignore it, youknow, you go through.
And that is really the only wayto get to the other side and to
grow from each time that cyclehits.
SPEAKER_01 (35:29):
Yeah.
SPEAKER_00 (35:30):
Yeah.
Speaking about cycling, um, youyou like you said, and you went
4,500 miles across the countrytogether?
I mean, together you guys didthat for stroke across America.
And I mean, that just wasn'tjust a trip.
(35:51):
I mean, that that's a big deal.
What inspired you to take thaton?
And what did you discover aboutyourselves and the stroke
community along the way?
And there was a documentary madeabout it, Stroke Across America
on PBS Inclusive Sports.
SPEAKER_01 (36:05):
Yeah, um, the the I really I love the the cycling
and the the stroke community is16 uh community events across
the country.
(36:25):
It's really a a lot of the workand so many people are craving
and and recovering.
SPEAKER_04 (36:35):
I mean, it was, you know, we probably we hosted
these 16 events, we probablyinteracted with a thousand or
more people, mostly survivorsand their families.
And and it just it justreinforced our belief that this
issue of rebuilding identity andthe emotional journey in
(36:57):
recovery is important and oftenoverlooked.
And then just just how inspiringpeople are who have kind of like
us, sort of figured figured outthis path on their own, and many
of whom are doing incrediblethings, it sort of increased our
(37:21):
resolve.
You know, we had founded StrokeOnward in 2019, but you know,
thought we'd keep it a prettysmall thing.
Um, and it it really made usthink that this needs to be
bigger.
There's more work to be done andlet us let us to recruit, you
know, given our age and becominggrandparents and wanting to slow
(37:42):
down a little bit.
Um, we knew that, you know,trying to really build a
nonprofit is a is a boatload ofwork, and we were probably a
little too old to take that ondirectly.
And so um, shortly after thetrip, we recruited an
experienced nonprofit CEO who'snow leading Stroke Onward so
that hopefully we can do more,build it into something bigger
(38:05):
and and make more of adifference.
SPEAKER_00 (38:07):
Yeah.
I want to talk about StrokeOnward, but before we do that, I
just want to like, what was yourmap across America?
I mean, like, what did you do?
How did and did you just likemake stops along the way and
meet people in the strokecommunity along the way?
SPEAKER_01 (38:24):
And the the 15 events uh across this country is
the uh sh we are the not moving.
SPEAKER_04 (38:36):
So, oh, rest days, um yeah, which we started to
call stress days.
Um the uh no, so the trip wasall planned out.
Yeah.
I mean, because we wereorganizing these events, we had
to know when we were gonna be ina place at a given time.
So we had a, you know, we had areschedule.
We hired somebody who is anexperienced bike trip organizer
(38:59):
and tour guide.
We had a support vehicle.
Um, we ended up inviting twoother survivors, one stroke
survivor, one brain injurysurvivor to ride with us.
Uh and then uh we ended up withtwo college student summaries
with us as well.
(39:20):
So there was sort of a coregroup of six that pretty much
rode all the way.
We always had a support driver,and we spent most nights in
campgrounds.
Our support vehicle was an RV.
Um, we kind of wanted to be alittle more comfortable.
So we we got to sleep in the RV.
(39:41):
We stayed in in motels everyonce in a while, um, kind of
when we needed to do laundry andand there wasn't a good
campground nearby.
But that was all planned out inadvance by somebody who had the
job of making sure all thatworked.
He and I kind of did the routetogether, but then it was his
his job.
And then he hired for part ofthe time, he was the support
(40:04):
driver.
And then at other times he hadstaff.
He and his wife run a smallbicycle tripping company.
So um um it was it was veryplanned out and it was it was
spectacular.
Riding cross country wassomething on my bucket list
since my one of my best friendsfrom college did it two years
after we graduated.
And so, you know, it was it wassomething we could do that was
(40:28):
something we wanted to dopersonally, but then we could
turn it into something to reallyhelp raise awareness and and
give the stroke onwardorganization a boost in its
visibility.
SPEAKER_01 (40:39):
And yeah, um so it rained a lot.
Really rained a rough one.
SPEAKER_00 (40:48):
But you just kept biking, huh?
Yeah, yeah, yeah.
You know, you you mentionedearlier, and I think that this
is all part of stroke onward.
So I would like you to talkabout all of this, is that you
talk about how stroke recovery,like you mentioned, isn't just
medical.
I mean, it's emotional,spiritual, relational, and the
(41:09):
system focuses on physicalrecovery, but not on rebuilding
identity and everything thatgoes into this.
Why do you think that that'sbeen overlooked?
And how can we change that?
Is that, I mean, is is strokeonward trying to change that?
SPEAKER_01 (41:27):
Yes, yeah, yeah.
SPEAKER_04 (41:28):
Yeah.
I mean, I think the why, youknow, this is just a hypothesis,
but you know, one, there's justnot enough mental health support
and emotional health support inour country, period.
Um, and it's often got stigmaattached to it.
People people brag about goingto the gym to work out to
preventatively help theirphysical health, but you don't
(41:50):
hear people you don't hearpeople bragging about the
wonderful counselor they have tojust check in and that that
seems to be changing a littlebit.
SPEAKER_00 (42:01):
That's interesting.
SPEAKER_04 (42:02):
Um, yeah the other thing is that that stroke grew
up in the critical care silos ofour medical system because it
starts as a criticalintervention.
SPEAKER_01 (42:13):
Yeah.
SPEAKER_04 (42:13):
And then it for everyone becomes a
rehabilitative intervention.
And by the time you know we tellthe story that Deb, for three
and a half years, Deb was just ahundred percent all about rehab
to get back to who she was.
And physical therapist thatheard our very first book talk
said, Hey, Deb, if I had triedto talk to you about what you
(42:37):
wrote about and talk about whenwe were working together a year
and a half after your stroke, Iwould have had a black eye,
bloody nose, back lip, or allthree, because you wouldn't have
wanted to about rebuilding adifferent life or getting your
old life back.
And so usually by the timepeople get to the place where
they really need that support,they're already disconnected
(42:59):
from the medical system.
Because unlike other chronicconditions like MS or ALS,
stroke isn't a deterioratingcondition.
Once you bottom out, you'restable.
You don't need that constantmedical care.
So you lose touch with mostaspects of the medical system.
So that's really what StrokeOnward is all about is trying to
(43:21):
figure out what additions orchanges to the medical system
could help people reconnect withthe kinds of support they need
when they need it.
And one of the challenges isthat everybody needs it at a
different time.
SPEAKER_03 (43:36):
Yeah.
SPEAKER_04 (43:37):
Some people get to that acceptance point of, okay,
my life's going to be differentnow.
What do I do in three months?
And some people it's threeyears, and some people it's 10
years.
So how do you connect them atthe right time?
And that really is what struckonwards working on.
SPEAKER_00 (43:54):
Yeah, you you did mention about how like
psychiatrists and psychologistsand social workers and those
types of people should beinvolved from the get-go.
Yeah, I agree.
I mean, you're you're working onyour physical self and like you
weren't ready for it, butsometimes those things just need
to be in place and help youthrough the journey.
(44:15):
And they are there when you wantor need them.
Yeah, I yeah, I agree.
SPEAKER_04 (44:20):
And of course, you then get into the whole ball of
wax of will insurance, if peoplehave insurance, will insurance
for it.
SPEAKER_00 (44:28):
Yeah.
And and that was another pointin your book that awareness
runs, you know, um, it'sunfortunate that recovery isn't
just personal, it's social.
And how do we make sure thateveryone, regardless of income
or zip code, has a fair shot atthe whole person recovery.
And what do we need to do forhealth equity?
SPEAKER_04 (44:51):
Equity is so a part of one of the reasons we chose
Liz Wilson, our CEO, is becauseshe's sort of lived her life
committed to issues of equity.
Um, her last big venture wasaround schools and access to
quality education for all kids,no matter their backgrounds.
(45:13):
And and um, you know, it's ait's a huge problem in our
country and certainly not onethat we're gonna solve.
But, you know, what we're tryingto do is as we think about the
changes that we might want totry to catalyze in the
healthcare system, that we tryto do it in such a way that it's
benefiting the broadest possibleswath of the population in need.
(45:38):
In fact, most notably those whohave the fewest resources.
Um and there is just there is noeasy answer.
And, you know, we're not sonaive as to think we're gonna
fix that whole, that wholeproblem, but we want to be very
conscious of it so that the workwe do doesn't just help and
(46:00):
improve the people with the bestaccess to medical care and the
most resources to self-fund ifthey need to, um, but rather,
you know, focus on how is itmost broadly available?
Um, everything, all theresources we've currently
created and disseminated are allavailable free to everyone so
(46:22):
that at least at that level,cost is not a barrier.
unknown (46:26):
Yeah.
SPEAKER_00 (46:27):
So people can just contact stroke onward after
somebody has a stroke, and thenyou provide these resources or
direct them where they need tobe.
SPEAKER_01 (46:38):
And and the the book guide is a phased, social work,
uh, or uh the NicoleProfessionals.
SPEAKER_04 (46:50):
On our website, um Deb was talking about book
discussion guides, and and we'vegot free downloadable.
So for particularly for peoplewith aphasia or speech
therapists who might want to doa book group.
Um, we've got some materialsthat make the book more
digestible, or even just, youknow, good old-fashioned Oprah
(47:10):
book group, um, sort ofsuggested questions to let a
broad group of people, even ifthey aren't directly connected
to stroke, think about theseissues of identity and
rebuilding.
Um, we've been told by peoplewho have been part of book
groups of a group of people kindof our age who are all
contemplating retirement, thatit was super helpful to think
(47:32):
about these issues in thatcontext.
Um, we have a new uh effort thatwas just launched on World
Stroke Day at the end of Octobercalled the Onward Community
Circle, or we abbreviate it SOC,SOCC, um, not SOCK, but we do
have a SOC drawer on theplatform.
(47:54):
And it's being built to be arobust, interactive platform for
survivors, care family members,care partners, uh, medical
professionals who are interestedin deepening the understanding
of these emotional journeyissues and helping to sort of
(48:15):
build the movement that candrive change.
So there are chat rooms andresources and live events uh on
this platform called SOC.
Um, and so yeah, we're trying touh get people who care about
this and and who need supportdirectly.
So stroke survivors who feelalone and disconnected can find
(48:38):
community.
Yeah.
Same for care partners andfamily members, same for medical
professionals who may think,God, our system just doesn't do
this well.
I wonder if there's anybodythinking about how to do it
better.
And our hope is to build a verybroad coalition of people who
can both support each other inan ever-evolving platform that
(49:01):
can take shape as the desireskind of reveal themselves, but
then also be part of a movementto say, okay, what change can we
really work toward to make it tomake it better?
Um, so that's that's one ofStroke Onward's biggest efforts
right now is the launch andbuilding of this platform called
(49:24):
called SA.
SPEAKER_00 (49:25):
It is so amazing that again, you are taking your
pain and putting it intopurpose, and you're creating
this website, strokeonward.org.
Is that correct?
SPEAKER_04 (49:38):
That's the website.
And on the website, there's alink to the the Stroke Onward
community circle, um, which isthe more interactive piece.
We didn't do that through thewebsite, we created a separate
platform.
SPEAKER_00 (49:52):
I mean, it's just brilliant.
You saw Need and you did it.
I mean, I you know, it's it'svery, very unfortunate that you
had this stroke in your lifetook this path.
But what is amazing about it isthat you took it and one of the
most profound things in yourbook, I just I loved it because
(50:17):
I love when people turn thingsinto something when they went
through something horrific.
We always talk about pain intopurpose on the podcast, and it
always circles back, like wesaid earlier, to perspective,
and you've turned thisexperience into purpose for
(50:39):
sure.
Instead of recreating a lesserversion of your old life, you've
integrated your new identitywith your old one, and you said
by embracing my stroke as partof my identity, I can now
explore and teach in new ways.
Yeah, yeah.
That was so profound to me.
(51:01):
I just sat in that for a whilebecause you know, you figured it
out.
You're teaching in new ways.
I mean, talk a little bit aboutthe process that brought you
there that and how you got herein ways that you never expected.
(51:23):
Yeah.
SPEAKER_04 (51:24):
I think I think when we first started, when the book
first came out, or even while wewere still writing the book, um
the aphasia community and theprofessionals, the incredible,
wonderful professionals, um,speech therapists who focus on
on supporting people withaphasia, and many of them are
university-based.
(51:44):
And so there's tons of greatresearch as well as clinical
programs, really kind of becausepeople with aphasia have so much
frustration as to how to rebuildtheir lives, that community
really embraced our thinking andour ideas early on and became
really important allies andmany, many good friends.
(52:07):
And and I think, you know,there's no question that when
you're faced with a trauma andyou're thinking about a
transition, get thatreinforcement that what you
might do would actually bereally, really welcomed and
appreciated and needed.
Um, that helps fuel purpose.
Yeah.
SPEAKER_01 (52:26):
And I think for Deb, it's the real a lot of the the
phase of classes, the Zoomclasses, and really a lot of
Zoom classes.
SPEAKER_04 (52:44):
Yeah, I mean, a number of speech therapy
professors have built the bookinto their curriculum, and we
often get invitations to cometalk to the class, mostly via
Zoom, because just practicallyspeaking, and that's
unbelievably rewarding to beable to talk to a group of 30
(53:05):
eager budding speech therapistswho are going to go out and help
people, and now we're able togive them this foundation so
that hopefully they do so withthe perspective of the broader
journey.
But and when the book came outand sort of looked at, okay,
what next?
We recognized that maybe there'san opportunity to do even more
(53:28):
that's meaningful.
And that led to the the creationof Stroke Onward.
SPEAKER_01 (53:33):
And the the lectures, I am I'd like to
teach.
SPEAKER_04 (53:41):
Yeah, one of the things Deb loves most about her
work at Stroke Onward is givingtalks, where through the
challenge of her communication,which obviously is significant,
um, she can still bring herunique perspective as an
identity scholar, an author, anda person with lived experience
(54:03):
of stroke and aphasia to help tohelp other people understand
something that maybe hearing itfrom an academic, uh a professor
in the field today doesn't landas sort of meaningfully as
hearing it from somebody withlived experience.
(54:25):
Yeah.
Right.
Right.
So, you know, that kind of thatkind of lecturing, um, which is
very different than a classroom,um, but but that's very
rewarding to Deb and incrediblyimpactful.
SPEAKER_00 (54:39):
Yeah.
You often talk about umindividuality and meeting
everyone where they are in yourbook.
And I say that all the timehere.
Uh, whether it's for a stroke ortrauma or grief or any other
kind of loss, every person'srecovery is so unique.
And the only way to help aperson is to meet them where
(55:00):
they are.
So I thought that I think thatthat's really amazing.
I want to switch gears here,though.
I want to ask you abouttechnology.
And you've written abouttechnology-driven adaptation,
communication aids, and howtools like AI can help survivors
rebuild identity andindependence.
Can you share how that'sunfolding and what gives you
(55:22):
hope about the future?
SPEAKER_01 (55:25):
Love and labs, the the the company, the Love and
Labs.
SPEAKER_04 (55:31):
Um Yeah, I mean, I so I mean, just three examples
of the way Deb is usingtechnology, um, both for
continued efforts torehabilitate, to gain more
capability, but also to um adaptto what she has.
11 Labs is uh an AI voicecompany based in London that
(55:57):
sort of the leader of creatingreplicating people's voices.
Um and lots of people talk aboutall the dangers of that because
of deep fakes and things likethat.
Sure.
In Deb's case, we were able toload into their software some
examples of talks she's given.
It's created uh an AI-drivenvoice that now we can enter a
(56:23):
script into the software and itwill speak with a voice that
isn't exactly Deb's, but it'spretty darn close.
SPEAKER_01 (56:32):
I agree.
SPEAKER_04 (56:32):
Um, and what that's let her do in a few situations
where she was giving longertalks to say, gosh, the amount
of time I have to spendpracticing to be able to give
the talk is immense.
SPEAKER_03 (56:46):
Wow.
SPEAKER_04 (56:46):
And it prevents me from doing other things that I
enjoy.
So we would take little piecesof the talk and put the script
into Eleven Labs and let we callDeb's AI voice Debatar.
Um and let let Debatar speak forher.
SPEAKER_00 (57:02):
Oh my gosh, that's so cool.
SPEAKER_04 (57:04):
It doesn't replace her voice, but it extends it and
it amplifies it.
SPEAKER_01 (57:09):
Um the the 11 labs is the the the impact the uh ALS
and Ruster.
SPEAKER_04 (57:21):
Yeah, they have uh they have something they call
their impact program, which isto give a million a million
people their voices back.
And so they're part ofnonprofits.
We have a partnership withStroke Onward.
Um, if anybody who joins ourcommunity circle that has a
speech impairment can get a freelicense of their software
through a partnership that we'veformed with them, and they've
(57:44):
done that with others, and theirgoal is to provide a million
free licenses worldwide toregain their voice.
Um, another one that Deb uses isuh something called a neural
sleeve, which is like a neoprenesleeve that goes over her leg
that has sensors in it anduh-driven brain that knows what
(58:11):
her gait is supposed to be likeand stimulates the muscles that
should be firing that her brainmay not be telling to fire.
So it's uh it's a uh a rehabtool that Deb is using again, 15
years after her stroke to try tocontinue to improve her walking
(58:33):
capabilities.
SPEAKER_01 (58:34):
And is the three days ago.
SPEAKER_04 (58:43):
Oh yeah.
When when I mentioned somebodycommented how how much better
she was walking, oh yeah, Debwas using this device to um to
to to help.
And then a third one is acompany uh called
Microtransponder that has aproduct called Vivistem that was
recently approved by the FDA,um, which is uh um it's an
(59:07):
implant.
It's kind of like a pacemaker,but instead of hooking it up to
the heart, it's hooked up to thevagus nerve.
It stimulates the vagus nerve.
And they're data that if you dointensive therapy while
stimulating the vagus nerve, itimproves the brain's ability to
(59:27):
rewire itself and learn.
So they've got FDA approval toplant the device and then have a
regimen, a six-week regimen ofintensive physical therapy.
And Deb is looking at havingthat surgery to see if she can
regain functional use of herright arm.
(59:47):
Um, and so and the the the thetandem, the the the sweat the
the Oh, there's another anothercompany and another product, Deb
has.
Has tried is a company called InTandem that has um a music.
They basically put a sensor onyour on your shoe um to to
(01:00:12):
detect the gate rhythm and thenit selects music with that gate
pace to try to encourage you towalk more consistently at the
gate that your mental therapisthas said is the best gate for
you and your rehab.
So I think the idea is that thatthere's such an overlap because
(01:00:36):
hope is such a powerful thingthat while we don't focus on
rehabilitation per se, theintersection between these new
tech-driven you know, is it arehab device or is it an
adaptive device?
That line is blurry.
And if it gives people hope thatthey can continue to live a
(01:01:00):
fuller, better life, then itimproves their mental state and
their emotions.
And that translates into otheraspects of their life.
So we see a lot of um of greatopportunity.
Um, you know, and and in fact,we think with Stroke Onward, one
(01:01:21):
of the places is creatingpartnerships with these kinds of
companies to really um help themaccess the people they're trying
to reach and also get input frompeople with lived experiences to
develop and refine theseproducts is a real, a real
(01:01:42):
opportunity for us.
SPEAKER_00 (01:01:44):
I mean, this is so inspiring to me to hear how
innovation and humanity can worktogether.
I mean, you know, you hear somany negative things about AI
and different things like that,but this is just, I mean, it can
be used for such good.
SPEAKER_03 (01:02:00):
Yeah.
SPEAKER_00 (01:02:01):
But you both are living proof that rebuilding
identity isn't about going back.
It's about growing forward.
So as we close, I just want toask you one more thing because
this is who you are.
Um, you've said that thisjourney has been about finding
new ways to do the things thatmatter, to keep meaning, joy,
(01:02:24):
and connection alive, maybe uhlaughing deeper and you know,
more connection and having moretime and those kind of things.
After all these years withpatience, partnership, and
purpose together, what doesliving in tandem mean to you
now?
SPEAKER_01 (01:02:43):
Stroke onward is really trying to do something
something cool.
SPEAKER_00 (01:02:57):
So you stroke onward is basically living in tandem
with people that have hadstrokes and their families.
Yeah.
SPEAKER_04 (01:03:03):
Yeah, and I think, I mean, I think about it from a
relationship perspective, andyou know, it's just it's just
doing doing the hard work tostay in balance and deal with
what sucks and celebrate what'sgreat and do it in a way that
ultimately works for both of us.
(01:03:24):
And you know, neither of usfeels like a burden and neither
of us resents.
And see.
And it's really no, you know, Imean, I sometimes I say, this
has got nothing to do with beingstroke survivor and care
partner.
This is what relationshipsthat's just it's that's all.
This maybe got a little bit moredifficult because disabilities
create an imbalance to what wewere used to.
(01:03:46):
And um, and we just we have tolean into that and not let it
drive us apart, but find ways toto to work to work on it
together.
And I guess, you know, thetandem, the tandem example, we
gotta we gotta pedal at the sametime.
If we don't, we don't goanywhere.
SPEAKER_00 (01:04:08):
Can they uh can people get to your book through
your website?
Is it everywhere?
SPEAKER_01 (01:04:15):
I mean, how do they reach you just through
strokeonward.org and go toAmazon for your book or the and
the the the the Amazon that thethe audiobook is out.
SPEAKER_04 (01:04:34):
Yeah, so and there's a page on our website that has
links to four or five majorresellers.
It's at most of the online somebookstores.
Um the audio book is actuallybeing distributed by a really
cool startup company calledAudio Brerie.
Um, it's available at all themajor audiobook, you know,
(01:04:56):
places, audible and whatnot, butit's also available at
Audiobrerie, um, which is a uh astartup that really celebrates
narrators and their role inbringing media out.
Um that's great.
Well, you can get to all of thatfrom the website um at
www.strokeonward.org.
(01:05:17):
Um, and then just look for thebook and and it's all there.
SPEAKER_00 (01:05:21):
Yeah.
Well, Deborah Meyerson and SteveZuckerman, thank you for
reminding us that while identitycan be shaken, it can also be
rebuilt, that love can beredefined, and that even when
life changes in ways we neverimagined, we can still move
forward together.
Their book, Identity Theft,Rediscovering Ourselves After
(01:05:43):
Stroke, second edition, isavailable now.
And I encourage every listenerto check out Stroke Onward, the
nonprofit they co-founded tosupport stroke survivors and
families.
This has been Life in Tandem,and I had to name it that
because a story of courage,connection, and the endless
capacity to begin again.
(01:06:04):
And Deborah, you show us thatlife is not over after a major
event like a stroke.
You are not done.
You are becoming.
Remember, there is purpose inthe pain and there is hope in
the journey.
I am Anne from Real Talk withTina and Anne, and we will see
you next time.
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