September 21, 2023 • 28 mins
PLEASE READ!
Please note that The Post Concussion Podcast has been closed for new episodes as of early 2024. Concussion Connect is also closed.
Thank you to everyone who was so supportive over the years and I hope these episodes continue to help others as they come across them!
I have set on a new venture (with a pen name - Izzy Barry) you can learn more about here
https://izzybarry.substack.com/
--
Guest Carole Starr author of 'To Root & To Rise' joins us to share her valuable insights. As a former educator and classical musician, Carole had to navigate her invisible injury and rebuild her life from the ground up. Her powerful account of transformation from denial to acceptance is truly inspiring, offering solace to those who might be experiencing similar challenges.
We dive into the process of accepting and identifying oneself after suffering a brain injury. From taking one day at a time to embracing the grace of self-forgiveness, Carole's strategies for overcoming adversity are a beacon for us all. This episode isn't just for survivors of brain injuries. It's for anyone who's faced a life-altering event and is seeking ways to accept, adapt, and rise again.
Learn more about Carole's book here: https://starrspeakerauthor.com/to-root-and-to-rise-book
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Bella Paige (00:03):
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the postconcussion podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
concussion Connect.
Let's make this invisibleinjury become visible.
(00:29):
The Post Concussion Podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
health provider with anyquestions you may have regarding
a medical condition.
(00:50):
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
Welcome to the post concussionpodcast with myself, Bella PaIge
and today's guest, Carole Starr.
(01:11):
In 1999, carol Starr sustaineda brain injury in a car accident
which left her unable to returnto her life as an educator and
a classical musician.
Over time, carol reinventedherself.
She is now a national keynotespeaker and the author of the
award-winning book To Root andTo Rise Accepting Brain Injury.
Carole is passionate aboutusing her experience to help
(01:33):
others coping with postconcussion syndrome.
Welcome to the show, carol,thank you.
So, to start, do you want totell us a little bit about your
brain injury experience?
Carole Starr (01:43):
Certainly so.
I have been living with braininjury for hard to believe 24
years now.
Just recently, just a few weeksago, I passed my 24th
brain-aversary.
My brain injury came from a caraccident.
I was broad-sided on thedriver's side by somebody going
about 50 miles an hour, andthat's the event that changed my
(02:03):
life.
Like so many of us, you havethat moment, that time, when
everything changed, when therewas a before and then there was
an after.
Prior to my injury, I was 32years old At the time it
happened.
I had been a teacher, I was anamateur musician, I was a
daughter, I was a sister, I wasa friend, I was a mother at some
(02:24):
point, and all of my identitieschanged and suddenly I didn't
know who I was anymore and whatwas going to happen to me,
because I felt like I became adifferent person Suddenly.
I couldn't teach anymore, Icouldn't do music anymore
because of sound sensitivities.
I struggled with taking care ofmyself.
(02:46):
I think that's one of thechallenges of brain injuries is,
even though we look many timesjust the same inside, we feel
like a wreck, like differentpeople, and we have to cope with
being different people butlooking the same on the outside.
Bella Paige (03:03):
Absolutely we do.
We talk about the invisibleaspect of this often on here,
because it was one of thebiggest challenges for me was
that it was invisible and notknowing who you are.
I found it really can changedepending on your age.
I was younger, so I thinkthere's different perspectives.
(03:24):
You were young too 32 is youngas well to suffer from a brain
injury.
I think when you're younger,it's kind of like well, now what
do I do with the rest of mylife?
Not how do I make this work.
It's more like I have to do mywhole life with this for some
people and that's.
I'm one of them.
So it's definitely a lot toaccept, a lot to get through,
and we are gonna talk about that.
But the biggest reason you'reon here is because of a book you
(03:48):
read called To Root and To Rise, and I absolutely loved it,
Thank you.
It's about accepting braininjury.
It's a great way to workthrough a lot of things that
brain injury survivors gothrough.
So do you want to talk aboutwhat led you to writing that?
Carole Starr (04:02):
Well, I have been a writer pretty much my entire
life.
Before the brain injury, I hadgone more than a year without
missing a single day writing inmy journal.
That record got smashed afterbrain injury.
My writing got sporadic.
A lot of times I didn't write,I could only write a little bit.
But I'm somebody who I hadalways, my whole life, wanted to
(04:23):
write a book.
I didn't know what I was gonnawrite about, I had no idea, but
it was just one of those kind oflife goals.
And then, after the braininjury, I just I knew that I
wanted to do something with thisexperience, that I wanted to
make a difference with it, and Ithink that's part of the, you
know, the being younger andhaving it happened is well, how
do I make meaning out of this?
(04:43):
How do I, you know, find a pathforward?
And I say, well, what you know,how can I, how can I help other
people?
And it took a long time to getto the point where I was ready.
I started writing, probablyaround, you know, five years or
so post, and I, oh goodness, Istruggled with it.
You know, I would write alittle bit here and there, but I
(05:04):
couldn't seem to get a kind ofa cohesive story out of it.
I knew that I didn't want totell my brain injury story kind
of beginning, you know, throughwhatever date it was it just
there were a lot of books outthere about brain injury that
kind of tell the survivor story.
That way, and I'm a teacher atheart, I've always been a
teacher.
I wanted to share wisdom abouthow do we live with this injury.
(05:28):
But the problem was I didn'thave any much wisdom yet.
So, you know, I had to, I hadto get that wisdom, and that
that takes time.
And so it took about 12 yearsreally to write the book.
And there was a long stretch andthey were.
I just I just gave up.
I said you know what, nope, Ican't do this.
But in this, in that stretch oftime was when I started to
(05:50):
speak about brain injury.
I wrote short things and Ididn't realize it at the time,
but I actually was writing thebook.
I just didn't know.
I was writing the book but Istill didn't have a, an overall
topic like what's going to tiethis all together?
And then it was around like2014, 2015.
And I had this sort of ahamoment, that acceptance because,
(06:11):
I struggled mightily withcoming to terms with the new
Carol.
With who am I now?
I mean?
I thought I can't do this, thisis going to break me.
But nobody was more surprisedthan I was when I eventually
came to terms with it, when Iwent from hating the new person
than I am now to actually likingthe new person that I am now,
(06:34):
and I realized I have somethingto say about that topic, that I
do have wisdom there, that Ithink that I can use what I've
been through in terms of tryingto accept because it was so hard
for me that I can help otherpeople with that.
And I knew that I wanted to keepthe chapters short, because so
(06:54):
many of us struggle with readingI mean, I still do to this day.
I read in short, little chunks.
I wanted there to be a lot ofspace between the paragraphs and
the words, because so many ofus myself included, you know
text can be overwhelming.
I wanted to make it a survivorfriendly book and I wanted
people to be able to not justread about my experience, but to
(07:17):
take their own experience, totake, you know, here is the
things, the strategies thatworked for me, and then to turn
around and say, all right,here's how I can make this work
for me.
Bella Paige (07:27):
I really love that and I love the being ready for
it and that is all of this.
I wasn't ready.
I wasn't in a mental placebecause I was so angry about it
too, like I wasn't in a place tohelp anyone because I was so
miserable about dealing with itmyself.
There was no way I was going tohelp anyone if I was struggling
(07:49):
so much at the same time andit's not that I don't still
struggle with my health.
Many people know on the show Ihave four chronic illnesses now
that battle each otherconstantly.
But my mental attitude whereI'm at is very different now,
and it does take time to write abook.
I wrote an entire book and then, before it was released, my
(08:10):
brother goes well, why don't youmake it visual?
Because that's what you wantedit to be.
So I changed, I rewrote anentire book.
It took three years to get thisbook done because I rewrote an
entire book and then scrapped itand then changed it into
visuals because it's like one ofmy favorite visual books I've
ever read and it can really taketime and sometimes people don't
(08:31):
realize that and I love how youknow it came together without
you even noticing.
I think that's really great.
And so acceptance was the youknow term that you came up with,
kind of the main themethroughout the book, which is
really important.
Do you want to talk about whatacceptance means to you?
We talk about acceptance.
(08:52):
We talk about it in supportgroup, we talk about it on
Congestion Connect and it'ssomething everyone struggles
with because it's not the sameto everyone.
Carole Starr (09:02):
Yes, it is one of those words that gets thrown at
us as survivors.
You know a lot.
You have to accept what'shappened.
You know to you and you know.
When that was said to me, I'mlike, well, heck, no, I am not
accepting this.
To me at first, acceptance meant, you know, I have to be okay
with what's happened to me.
I have to like what's happenedto me, I have to settle.
(09:24):
I have to say, well, I'm goingto have a less than life and I
didn't want to be that person.
The acceptance meant I wasgoing to have to be okay with
brain injury symptoms impactingmy life, you know, every day.
And as it turns out, the waythat I thought about acceptance
(09:47):
at the beginning, it wasn'tquite accurate.
It doesn't mean I have to likehaving a brain injury.
I still do not like having abrain injury.
I will never be like ooh, youknow, sign me up.
Yes, I want to have a braininjury, but I've learned that I
can accept the symptoms and Idon't have to like them, but I
can accept the impact that theyhave on me and I can.
(10:11):
Instead of fighting against mybrain injury, I can learn to
work with it.
That when I call her brainhilda.
You know, when brain hildacomes out, I can either fight
against her but she always winsevery single time, you know or I
can say okay, brain hilda istelling me that I'm getting
tired, therefore I need to rest.
If I rest sooner, if I acceptthat, all right, it's time to
(10:36):
lie down.
I will lie down for less timethan if I fight.
I'll pay for it with hours ordays on the couch.
It's knowing that, that yes, I'mgoing to live with brain injury
symptoms till the end of mydays, but life is not ruined,
life is different and thatdifferent doesn't have to be
ruined that I will always missthe life I had before, the life
(11:02):
I could have had.
I will always wonder about whowould I have been, you know, if
this hadn't happened to me, andI think that's okay to do that.
But acceptance is saying okay,who am I now?
The acceptance is aboutbecoming the best person that I
am with the brain injury andgoing forward as that, as that
(11:24):
person.
I am not saying that that'seasy and that's just like this
snap your fingers and there youare.
It takes years.
It took me a good eight yearsto get there for me, but at
first it was.
I spent the first five years indenial.
Oh no, oh no, I'm going tofully recover from this brain
injury.
No, you're all wrong.
Bella Paige (11:45):
Nope, nope, I'm going to get back, yeah.
Carole Starr (11:50):
And then I spent time fighting against the
symptoms.
It's like, no, there has to bea strategy, there has to be a
treatment that can stop me fromoverloading, so it can stop my
brain from winning, and it'slike nope, and eventually it's
like I just have to learn to, togo with it and like, all right,
when brain hilda comes out, Idon't like it, but it is what it
(12:10):
is, and to the couch I go,it'll get better in a few hours,
it'll get better tomorrow, do I?
Bella Paige (12:18):
like it.
Carole Starr (12:18):
Nope, but do I accept it?
Yes, it's learning to laugh atit.
It's learning to find thethings that I can do, to focus
on those things versus thethings that I can't do.
It's learning to find, well,what am I grateful for, what are
those silver linings that arehere?
So it's acceptance isn't anyone thing.
(12:40):
It's a whole bunch of littlepieces that eventually can all
come together and then all of asudden you can realize, hey, you
know, I have accepted this, butit's, it's not necessarily the
end of grief.
Like I said, I still not all thetime, but I still sometimes
grieve the person that I was, orthe person that I think maybe I
(13:00):
could have been had this nothappened to me.
The difference in terms ofhaving kind of reached
acceptance is that I don't getstuck there.
Yes, I do, I feel it 100%.
You're always going to wonder,but then you continue on the
path that you're on.
It's looking forward versuslooking backward.
(13:21):
I know for me, the more time Ispent looking backward at who I
was and what I lost, the worse Ifelt that had to make that
switch to looking forward at whoI am now and what can I do.
Bella Paige (13:36):
Yeah, I really I loved all that you said,
mentioning the grief that youstill feel some days.
My mom calls them my hate theworld days Because she'll see me
and she's like, are we hatingthe world today?
And I'm like, yep, and she'sthe one who kind of she's the
first person that ever told meit was okay to hate the world
(13:57):
for what has happened to me.
And she's like, that's okay, wecan hate the world today, but
tomorrow we won't hate the worldanymore and that can make a
really big difference.
That takes a long time to getthere.
Like you said, I used to hatethe world and that just never
went away.
Yes, but I call the hate theworld days because, like you
know what, today it is awful.
(14:19):
I still have those feelings, too, where I reflect back.
Sometimes it happens justwalking out onto my deck.
I live on a five acre not hugebut beautiful property.
It's full of trees, lots ofprivacy, and some days I walk
out there and go how did thisturn into my life?
I go to cut the lawn and I'mlike, how am I cutting the lawn
right now when I should be showjumping horses around the world?
(14:42):
How did I end up in one placeand not every place, you know,
and all those types of thingsand those emotions.
They don't go away, they comeup, but right now I'd say it's
every few months.
I have that feeling.
It used to be every day, thenit was every week and, you know,
when it slowly gets better.
And you mentioned that pick thislife isn't acceptance for a lot
(15:05):
of people or grateful for it.
And I'm the same.
I always tell people if I couldgo back and not have this
happen, I would and I will never.
I don't think that will everchange because to me, being ill
for life is definitely not thepath I would have ever hoped for
anyone.
It doesn't mean that I can'tlove this life, that I can't
(15:26):
enjoy it, that it's not a goodlife.
I live with all these symptomsevery day and we talk about that
.
I do that one-on-one withpeople Every day.
I work with someone or a fewpeople on living with this,
because living with it can makethe big difference versus
fighting against it, and that'sa huge thing and we are gonna
talk about you know that.
(15:47):
Who am I now kind of feelingthat it happens and some of the
structure of to root and to rise.
But before that, we're gonnatake a quick break.
Did you want to createawareness about concussions?
You can check out our entireclothing line through the link
in the episode description or goto our website
postconcussioninkcom and clickawareness merch from t-shirts,
(16:09):
sweaters, tank tops and multipledesigns, including the podcast
Nothing Mild About a Concussionand more.
Make sure to pause this episoderight now and order yours
before you forget, just like Iwould.
Welcome back to the postconcussion podcast with myself,
Belle Paige and today's guest,Carole Starr.
So we've talked aboutacceptance.
(16:31):
We've talked about to root andto rise.
Something I really liked intoto root and to rise is it's not
your typical book, like you hadkind of mentioned.
Do you want to talk a littlebit about the structure within
the book?
Carole Starr (16:44):
Yes, it is a workbook that, because I am a
teacher at heart, I wantedpeople to be able to take
something away from the bookbeyond just the reading of it.
That each chapter is aself-contained chapter.
As I mentioned, many survivors,myself included, have trouble
(17:05):
reading, so every chapter isself-contained in that you don't
have to read the book in theorder that it's written.
I wrote it in an order that madesense to me, based on kind of
my own acceptance journey, butyou can choose to read it and
say you know what?
This is the chapter I think Ineed today and you can go right
there, because each chapterdoesn't depend on the chapters
(17:27):
before it.
They're short and within eachchapter there are questions with
space that, if you choose tothat, you can write your answers
to those questions, things tothink about, based on whatever
the topic, the strategies that Italked about in that particular
(17:48):
chapter.
I knew from the very beginningof, even when I was very early
in the writing process, that Iwanted to do something like that
, to make it useful for people,so that people could not only
see themselves in my story butgo beyond that and take it for
(18:09):
themselves and figure out well,how does this apply to me?
How do I take these strategiesand make it work within my own
brain injury story?
Bella Paige (18:21):
Absolutely.
I really liked that setupbecause it makes you think a
little bit harder and actuallybe responsible for an answer.
We think about it, but youwrite it out actually put it out
there.
If you're like me, your headinjury's changed your writing
and it looks horrific now, butthat's okay.
And so a chapter in your bookthat was really important to me
(18:46):
as you mentioned differentaspects of it was about being
who you are now.
Who am I now is something I'vestruggled with.
It's something I'm goingthrough right now is it's
changing again, and it'schanging because of my health,
because a lot of my health stuffhas changed over the last year
and a lot of survivors strugglewith this.
(19:06):
So do you want to kind of talkabout some advice for who am I
now?
Because it's something we alldefinitely feel.
Carole Starr (19:14):
I think brain injury.
It is kind of like growing upall over again, and when we were
growing up the first time weexperimented, we tried new
things.
We had to figure out who am Inow, who am I, what does this
version of myself like to do,what do I not like to do?
(19:36):
And I think we have to giveourselves grace how to give
ourselves permission toexperiment, to find out things
about ourselves as who we arenow and what works and what
doesn't work, and to think aboutthings in terms of using
(19:58):
strategies.
I mean, I'm actually I'm in theprocess of doing this myself.
Actually, as we speak, I'mtaking a genealogy class.
Right, I've always lovedgenealogy, but I am challenging
myself by taking the classes thefirst class that I've taken
since my brain injury and Iwon't lie, I am struggling a
little bit because it's a lotfor my brain and trying to find
(20:21):
strategies and does this work?
For who am I now?
And trying to answer thatquestion.
It is about giving ourselvespermission to do that and
permission to try those newthings and know that sometimes
things are going to work andsometimes things won't work.
(20:44):
I think in the book I talk aboutkind of building new structures
that you know, a brain injury.
It destroys the houses thatwe've built for ourselves, the
metaphorical houses, thestructure of who we are.
So we have to build newstructures.
And brain injury it is achronic condition.
I've been living with it nowfor 24 years.
(21:05):
Things ebb and flow, sometimessome things get better,
sometimes things get worse, andsometimes it's like, well, that
used to be easy, but that's notso easy anymore.
So now I need a new strategy.
It is the gift that keeps ongiving and it is this
never-ending process of figuringout who we are.
(21:25):
I think that's true for life ingeneral, but I think when you
get brain injury on top of it,because there's that grief
inside us about who we used tobe and what might have been, I
think we feel differently aboutthe whole process than maybe we
might have felt.
When I look at how thingsunfold over time, it's like, wow
(21:48):
, look how far I've come.
I get frustrated in the smallpieces of time because it's like
, oh really, how long is thisgoing to take?
But I think it's important tonot give up that I am 24 years
out and I am still makingprogress.
I mean, is it slow?
(22:10):
Oh gosh, yes, am I ever goingto be the person I was on July
5th 1999, the day before myaccident?
No, but that's not the point.
I'm not trying to be her, I'mtrying to be whatever version of
me I am now.
Bella Paige (22:25):
Yeah, I really like that and I like the aspect of
realizing how much progressyou've made, because sometimes
it's hard when you look atyourself before your injury.
I think this is something thatpeople that are a little older
get affected by more, becausethey actually remember that
(22:45):
before.
For myself, it's little things.
I read a book and I love toread, and I get lots of books
sent to me, like yours and manyothers, and I love to read them.
I used to be able to do that ina day.
If you gave me a book I couldhave read it and recorded with
you tomorrow.
But now I need a month, notonly because of time to actually
(23:07):
find time to read, but alsojust I read a lot slower than I
used to, and for me that part'sfrustrating because I used to be
able to like I've had so manybooks lately sent in and I had
to push podcasts out like monthsbecause I'm like I can't even
promise that I'll get to it yet.
And I love to read.
I like to read the book beforeI speak about the book, and
(23:28):
that's something that frustratesme.
But if you go back two yearsago, I couldn't read at all.
It's frustrating, but Icouldn't pick up a book two
years ago.
So it's a lot of progress whenyou think about it that way.
And you know, I thinkthe因prehension of our passions
change and I think that'ssomething that's important to
remember.
And sometimes our health doeshave to do with that.
(23:49):
For me, I had to retire from theshow-jumping career and then I
was dedicated to finding anothersport and I actually wrote
about this on Congestion Connectthe other day about how I spent
so much time finding somethingelse because I had this thing in
my mind, in the back of my mind, without realizing it, that if
(24:11):
I could get to the top ofanother sport, I'd get the same
happiness that I had before fromthe show-jumping.
And so I've spent three yearsdoing that almost four and now
I've gotten to the point whereI'm starting to realize that I
don't need that anymore.
You know, I don't feel thedesire to go out and or like six
days a week, I'd rather doother things like read a book.
(24:34):
I don't need to get betterevery day at a sport, I can just
enjoy my life.
But for a long time that's howmy brain was wired.
It was we're gonna do anothersport and we're gonna get to the
top I did it with archery toothat if we get really good
really fast, then we'll get todo what we always dreamed of.
You know, the whole Olympicthing, all that stuff in my
brain.
I don't think I ever admittedto that to myself before this
(24:57):
month actually, but it justshows that that who am I now is
constantly changing and it'sokay to kind of be confused by
it.
I was super confused when Iwent to our biking and was like
I don't really want to do thisright now, like I'm not enjoying
myself and for me life is allabout enjoyment.
So I've taken a little breakand I think that's okay.
(25:17):
And that's something that ishard to do.
Yes, because we think we'vecreated a new identity and then
all of a sudden it's like, oh,but that's not a part of it,
like is that still a part of me,is it not?
And you know it's somethingthat goes back and forth and you
know I really love your view ofthe now aspect to it, because
it really does change.
Now is different than tomorrowand I think it's important to
(25:40):
remember that and you've given alot of wonderful advice.
I strongly recommend to rootand to rise.
We will have it, access tolinks to it in our episode
description in our website.
But is there anything else youwould like to add before ending
today's episode?
Carole Starr (25:54):
As you were talking.
It made me think about, I think, the things that defined us
before, like you were justtalking about.
You know, like the sport or thereading.
I think those are theparticularly difficult things.
Like for me, that was likemusic reading was a thing that
we have to work through thegrief over how those things are
(26:15):
different in order to find thewho are we now, and that's part
of the process is workingthrough the grief over how those
things are different in ourlives.
For me, for a long time I had tolike let music go completely.
I couldn't do anything becauseit just brought up such heart
wrenching grief for me that Ijust I couldn't bear even doing
anything, even if it was alittle bit different, because it
(26:37):
was too much grief.
And that's okay if you have tojust let something go for a
while because it's too, becauseit's too much.
But sometimes things come back,you know, in different ways.
It's all a process and to knowthat where we are now is not
where you're going to be a yearfrom now, two years from now,
five years from now, 10 yearsfrom now, this is a, it is a
(27:00):
journey, it is a process and itis possible to to accept what's
happened to us and to moveforward into a different life
than the one that we thought wewere going to have.
Bella Paige (27:14):
Absolutely, and you know, my life looks drastically
different, like different thanwhat it would have been without
all this.
Me too, and yeah, and I thinkit's sometimes overwhelming if I
actually drew out one pathversus the other, but I do
really want to thank you so muchfor joining us today and
sharing a lot of your insightabout life after brain injury.
Carole Starr (27:36):
Thank you so much.
Bella Paige (27:38):
Need more than just this podcast.
Be sure to check out ourwebsite postconcussioninkcom, to
see how we can help you in yourpost concussion life, From a
support network to one-on-onecoaching.
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the postconcussion podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
concussion Connect.
Let's make this invisibleinjury become visible.
(00:29):
The Post Concussion Podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
health provider with anyquestions you may have regarding
a medical condition.
(00:50):
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
Welcome to the post concussionpodcast with myself, Bella PaIge
and today's guest, Carole Starr.
(01:11):
In 1999, carol Starr sustaineda brain injury in a car accident
which left her unable to returnto her life as an educator and
a classical musician.
Over time, carol reinventedherself.
She is now a national keynotespeaker and the author of the
award-winning book To Root andTo Rise Accepting Brain Injury.
Carole is passionate aboutusing her experience to help
(01:33):
others coping with postconcussion syndrome.
Welcome to the show, carol,thank you.
So, to start, do you want totell us a little bit about your
brain injury experience?
Carole Starr (01:43):
Certainly so.
I have been living with braininjury for hard to believe 24
years now.
Just recently, just a few weeksago, I passed my 24th
brain-aversary.
My brain injury came from a caraccident.
I was broad-sided on thedriver's side by somebody going
about 50 miles an hour, andthat's the event that changed my
(02:03):
life.
Like so many of us, you havethat moment, that time, when
everything changed, when therewas a before and then there was
an after.
Prior to my injury, I was 32years old At the time it
happened.
I had been a teacher, I was anamateur musician, I was a
daughter, I was a sister, I wasa friend, I was a mother at some
(02:24):
point, and all of my identitieschanged and suddenly I didn't
know who I was anymore and whatwas going to happen to me,
because I felt like I became adifferent person Suddenly.
I couldn't teach anymore, Icouldn't do music anymore
because of sound sensitivities.
I struggled with taking care ofmyself.
(02:46):
I think that's one of thechallenges of brain injuries is,
even though we look many timesjust the same inside, we feel
like a wreck, like differentpeople, and we have to cope with
being different people butlooking the same on the outside.
Bella Paige (03:03):
Absolutely we do.
We talk about the invisibleaspect of this often on here,
because it was one of thebiggest challenges for me was
that it was invisible and notknowing who you are.
I found it really can changedepending on your age.
I was younger, so I thinkthere's different perspectives.
(03:24):
You were young too 32 is youngas well to suffer from a brain
injury.
I think when you're younger,it's kind of like well, now what
do I do with the rest of mylife?
Not how do I make this work.
It's more like I have to do mywhole life with this for some
people and that's.
I'm one of them.
So it's definitely a lot toaccept, a lot to get through,
and we are gonna talk about that.
But the biggest reason you'reon here is because of a book you
(03:48):
read called To Root and To Rise, and I absolutely loved it,
Thank you.
It's about accepting braininjury.
It's a great way to workthrough a lot of things that
brain injury survivors gothrough.
So do you want to talk aboutwhat led you to writing that?
Carole Starr (04:02):
Well, I have been a writer pretty much my entire
life.
Before the brain injury, I hadgone more than a year without
missing a single day writing inmy journal.
That record got smashed afterbrain injury.
My writing got sporadic.
A lot of times I didn't write,I could only write a little bit.
But I'm somebody who I hadalways, my whole life, wanted to
(04:23):
write a book.
I didn't know what I was gonnawrite about, I had no idea, but
it was just one of those kind oflife goals.
And then, after the braininjury, I just I knew that I
wanted to do something with thisexperience, that I wanted to
make a difference with it, and Ithink that's part of the, you
know, the being younger andhaving it happened is well, how
do I make meaning out of this?
(04:43):
How do I, you know, find a pathforward?
And I say, well, what you know,how can I, how can I help other
people?
And it took a long time to getto the point where I was ready.
I started writing, probablyaround, you know, five years or
so post, and I, oh goodness, Istruggled with it.
You know, I would write alittle bit here and there, but I
(05:04):
couldn't seem to get a kind ofa cohesive story out of it.
I knew that I didn't want totell my brain injury story kind
of beginning, you know, throughwhatever date it was it just
there were a lot of books outthere about brain injury that
kind of tell the survivor story.
That way, and I'm a teacher atheart, I've always been a
teacher.
I wanted to share wisdom abouthow do we live with this injury.
(05:28):
But the problem was I didn'thave any much wisdom yet.
So, you know, I had to, I hadto get that wisdom, and that
that takes time.
And so it took about 12 yearsreally to write the book.
And there was a long stretch andthey were.
I just I just gave up.
I said you know what, nope, Ican't do this.
But in this, in that stretch oftime was when I started to
(05:50):
speak about brain injury.
I wrote short things and Ididn't realize it at the time,
but I actually was writing thebook.
I just didn't know.
I was writing the book but Istill didn't have a, an overall
topic like what's going to tiethis all together?
And then it was around like2014, 2015.
And I had this sort of ahamoment, that acceptance because,
(06:11):
I struggled mightily withcoming to terms with the new
Carol.
With who am I now?
I mean?
I thought I can't do this, thisis going to break me.
But nobody was more surprisedthan I was when I eventually
came to terms with it, when Iwent from hating the new person
than I am now to actually likingthe new person that I am now,
(06:34):
and I realized I have somethingto say about that topic, that I
do have wisdom there, that Ithink that I can use what I've
been through in terms of tryingto accept because it was so hard
for me that I can help otherpeople with that.
And I knew that I wanted to keepthe chapters short, because so
(06:54):
many of us struggle with readingI mean, I still do to this day.
I read in short, little chunks.
I wanted there to be a lot ofspace between the paragraphs and
the words, because so many ofus myself included, you know
text can be overwhelming.
I wanted to make it a survivorfriendly book and I wanted
people to be able to not justread about my experience, but to
(07:17):
take their own experience, totake, you know, here is the
things, the strategies thatworked for me, and then to turn
around and say, all right,here's how I can make this work
for me.
Bella Paige (07:27):
I really love that and I love the being ready for
it and that is all of this.
I wasn't ready.
I wasn't in a mental placebecause I was so angry about it
too, like I wasn't in a place tohelp anyone because I was so
miserable about dealing with itmyself.
There was no way I was going tohelp anyone if I was struggling
(07:49):
so much at the same time andit's not that I don't still
struggle with my health.
Many people know on the show Ihave four chronic illnesses now
that battle each otherconstantly.
But my mental attitude whereI'm at is very different now,
and it does take time to write abook.
I wrote an entire book and then, before it was released, my
(08:10):
brother goes well, why don't youmake it visual?
Because that's what you wantedit to be.
So I changed, I rewrote anentire book.
It took three years to get thisbook done because I rewrote an
entire book and then scrapped itand then changed it into
visuals because it's like one ofmy favorite visual books I've
ever read and it can really taketime and sometimes people don't
(08:31):
realize that and I love how youknow it came together without
you even noticing.
I think that's really great.
And so acceptance was the youknow term that you came up with,
kind of the main themethroughout the book, which is
really important.
Do you want to talk about whatacceptance means to you?
We talk about acceptance.
(08:52):
We talk about it in supportgroup, we talk about it on
Congestion Connect and it'ssomething everyone struggles
with because it's not the sameto everyone.
Carole Starr (09:02):
Yes, it is one of those words that gets thrown at
us as survivors.
You know a lot.
You have to accept what'shappened.
You know to you and you know.
When that was said to me, I'mlike, well, heck, no, I am not
accepting this.
To me at first, acceptance meant, you know, I have to be okay
with what's happened to me.
I have to like what's happenedto me, I have to settle.
(09:24):
I have to say, well, I'm goingto have a less than life and I
didn't want to be that person.
The acceptance meant I wasgoing to have to be okay with
brain injury symptoms impactingmy life, you know, every day.
And as it turns out, the waythat I thought about acceptance
(09:47):
at the beginning, it wasn'tquite accurate.
It doesn't mean I have to likehaving a brain injury.
I still do not like having abrain injury.
I will never be like ooh, youknow, sign me up.
Yes, I want to have a braininjury, but I've learned that I
can accept the symptoms and Idon't have to like them, but I
can accept the impact that theyhave on me and I can.
(10:11):
Instead of fighting against mybrain injury, I can learn to
work with it.
That when I call her brainhilda.
You know, when brain hildacomes out, I can either fight
against her but she always winsevery single time, you know or I
can say okay, brain hilda istelling me that I'm getting
tired, therefore I need to rest.
If I rest sooner, if I acceptthat, all right, it's time to
(10:36):
lie down.
I will lie down for less timethan if I fight.
I'll pay for it with hours ordays on the couch.
It's knowing that, that yes, I'mgoing to live with brain injury
symptoms till the end of mydays, but life is not ruined,
life is different and thatdifferent doesn't have to be
ruined that I will always missthe life I had before, the life
(11:02):
I could have had.
I will always wonder about whowould I have been, you know, if
this hadn't happened to me, andI think that's okay to do that.
But acceptance is saying okay,who am I now?
The acceptance is aboutbecoming the best person that I
am with the brain injury andgoing forward as that, as that
(11:24):
person.
I am not saying that that'seasy and that's just like this
snap your fingers and there youare.
It takes years.
It took me a good eight yearsto get there for me, but at
first it was.
I spent the first five years indenial.
Oh no, oh no, I'm going tofully recover from this brain
injury.
No, you're all wrong.
Bella Paige (11:45):
Nope, nope, I'm going to get back, yeah.
Carole Starr (11:50):
And then I spent time fighting against the
symptoms.
It's like, no, there has to bea strategy, there has to be a
treatment that can stop me fromoverloading, so it can stop my
brain from winning, and it'slike nope, and eventually it's
like I just have to learn to, togo with it and like, all right,
when brain hilda comes out, Idon't like it, but it is what it
(12:10):
is, and to the couch I go,it'll get better in a few hours,
it'll get better tomorrow, do I?
Bella Paige (12:18):
like it.
Carole Starr (12:18):
Nope, but do I accept it?
Yes, it's learning to laugh atit.
It's learning to find thethings that I can do, to focus
on those things versus thethings that I can't do.
It's learning to find, well,what am I grateful for, what are
those silver linings that arehere?
So it's acceptance isn't anyone thing.
(12:40):
It's a whole bunch of littlepieces that eventually can all
come together and then all of asudden you can realize, hey, you
know, I have accepted this, butit's, it's not necessarily the
end of grief.
Like I said, I still not all thetime, but I still sometimes
grieve the person that I was, orthe person that I think maybe I
(13:00):
could have been had this nothappened to me.
The difference in terms ofhaving kind of reached
acceptance is that I don't getstuck there.
Yes, I do, I feel it 100%.
You're always going to wonder,but then you continue on the
path that you're on.
It's looking forward versuslooking backward.
(13:21):
I know for me, the more time Ispent looking backward at who I
was and what I lost, the worse Ifelt that had to make that
switch to looking forward at whoI am now and what can I do.
Bella Paige (13:36):
Yeah, I really I loved all that you said,
mentioning the grief that youstill feel some days.
My mom calls them my hate theworld days Because she'll see me
and she's like, are we hatingthe world today?
And I'm like, yep, and she'sthe one who kind of she's the
first person that ever told meit was okay to hate the world
(13:57):
for what has happened to me.
And she's like, that's okay, wecan hate the world today, but
tomorrow we won't hate the worldanymore and that can make a
really big difference.
That takes a long time to getthere.
Like you said, I used to hatethe world and that just never
went away.
Yes, but I call the hate theworld days because, like you
know what, today it is awful.
(14:19):
I still have those feelings, too, where I reflect back.
Sometimes it happens justwalking out onto my deck.
I live on a five acre not hugebut beautiful property.
It's full of trees, lots ofprivacy, and some days I walk
out there and go how did thisturn into my life?
I go to cut the lawn and I'mlike, how am I cutting the lawn
right now when I should be showjumping horses around the world?
(14:42):
How did I end up in one placeand not every place, you know,
and all those types of thingsand those emotions.
They don't go away, they comeup, but right now I'd say it's
every few months.
I have that feeling.
It used to be every day, thenit was every week and, you know,
when it slowly gets better.
And you mentioned that pick thislife isn't acceptance for a lot
(15:05):
of people or grateful for it.
And I'm the same.
I always tell people if I couldgo back and not have this
happen, I would and I will never.
I don't think that will everchange because to me, being ill
for life is definitely not thepath I would have ever hoped for
anyone.
It doesn't mean that I can'tlove this life, that I can't
(15:26):
enjoy it, that it's not a goodlife.
I live with all these symptomsevery day and we talk about that
.
I do that one-on-one withpeople Every day.
I work with someone or a fewpeople on living with this,
because living with it can makethe big difference versus
fighting against it, and that'sa huge thing and we are gonna
talk about you know that.
(15:47):
Who am I now kind of feelingthat it happens and some of the
structure of to root and to rise.
But before that, we're gonnatake a quick break.
Did you want to createawareness about concussions?
You can check out our entireclothing line through the link
in the episode description or goto our website
postconcussioninkcom and clickawareness merch from t-shirts,
(16:09):
sweaters, tank tops and multipledesigns, including the podcast
Nothing Mild About a Concussionand more.
Make sure to pause this episoderight now and order yours
before you forget, just like Iwould.
Welcome back to the postconcussion podcast with myself,
Belle Paige and today's guest,Carole Starr.
So we've talked aboutacceptance.
(16:31):
We've talked about to root andto rise.
Something I really liked intoto root and to rise is it's not
your typical book, like you hadkind of mentioned.
Do you want to talk a littlebit about the structure within
the book?
Carole Starr (16:44):
Yes, it is a workbook that, because I am a
teacher at heart, I wantedpeople to be able to take
something away from the bookbeyond just the reading of it.
That each chapter is aself-contained chapter.
As I mentioned, many survivors,myself included, have trouble
(17:05):
reading, so every chapter isself-contained in that you don't
have to read the book in theorder that it's written.
I wrote it in an order that madesense to me, based on kind of
my own acceptance journey, butyou can choose to read it and
say you know what?
This is the chapter I think Ineed today and you can go right
there, because each chapterdoesn't depend on the chapters
(17:27):
before it.
They're short and within eachchapter there are questions with
space that, if you choose tothat, you can write your answers
to those questions, things tothink about, based on whatever
the topic, the strategies that Italked about in that particular
(17:48):
chapter.
I knew from the very beginningof, even when I was very early
in the writing process, that Iwanted to do something like that
, to make it useful for people,so that people could not only
see themselves in my story butgo beyond that and take it for
(18:09):
themselves and figure out well,how does this apply to me?
How do I take these strategiesand make it work within my own
brain injury story?
Bella Paige (18:21):
Absolutely.
I really liked that setupbecause it makes you think a
little bit harder and actuallybe responsible for an answer.
We think about it, but youwrite it out actually put it out
there.
If you're like me, your headinjury's changed your writing
and it looks horrific now, butthat's okay.
And so a chapter in your bookthat was really important to me
(18:46):
as you mentioned differentaspects of it was about being
who you are now.
Who am I now is something I'vestruggled with.
It's something I'm goingthrough right now is it's
changing again, and it'schanging because of my health,
because a lot of my health stuffhas changed over the last year
and a lot of survivors strugglewith this.
(19:06):
So do you want to kind of talkabout some advice for who am I
now?
Because it's something we alldefinitely feel.
Carole Starr (19:14):
I think brain injury.
It is kind of like growing upall over again, and when we were
growing up the first time weexperimented, we tried new
things.
We had to figure out who am Inow, who am I, what does this
version of myself like to do,what do I not like to do?
(19:36):
And I think we have to giveourselves grace how to give
ourselves permission toexperiment, to find out things
about ourselves as who we arenow and what works and what
doesn't work, and to think aboutthings in terms of using
(19:58):
strategies.
I mean, I'm actually I'm in theprocess of doing this myself.
Actually, as we speak, I'mtaking a genealogy class.
Right, I've always lovedgenealogy, but I am challenging
myself by taking the classes thefirst class that I've taken
since my brain injury and Iwon't lie, I am struggling a
little bit because it's a lotfor my brain and trying to find
(20:21):
strategies and does this work?
For who am I now?
And trying to answer thatquestion.
It is about giving ourselvespermission to do that and
permission to try those newthings and know that sometimes
things are going to work andsometimes things won't work.
(20:44):
I think in the book I talk aboutkind of building new structures
that you know, a brain injury.
It destroys the houses thatwe've built for ourselves, the
metaphorical houses, thestructure of who we are.
So we have to build newstructures.
And brain injury it is achronic condition.
I've been living with it nowfor 24 years.
(21:05):
Things ebb and flow, sometimessome things get better,
sometimes things get worse, andsometimes it's like, well, that
used to be easy, but that's notso easy anymore.
So now I need a new strategy.
It is the gift that keeps ongiving and it is this
never-ending process of figuringout who we are.
(21:25):
I think that's true for life ingeneral, but I think when you
get brain injury on top of it,because there's that grief
inside us about who we used tobe and what might have been, I
think we feel differently aboutthe whole process than maybe we
might have felt.
When I look at how thingsunfold over time, it's like, wow
(21:48):
, look how far I've come.
I get frustrated in the smallpieces of time because it's like
, oh really, how long is thisgoing to take?
But I think it's important tonot give up that I am 24 years
out and I am still makingprogress.
I mean, is it slow?
(22:10):
Oh gosh, yes, am I ever goingto be the person I was on July
5th 1999, the day before myaccident?
No, but that's not the point.
I'm not trying to be her, I'mtrying to be whatever version of
me I am now.
Bella Paige (22:25):
Yeah, I really like that and I like the aspect of
realizing how much progressyou've made, because sometimes
it's hard when you look atyourself before your injury.
I think this is something thatpeople that are a little older
get affected by more, becausethey actually remember that
(22:45):
before.
For myself, it's little things.
I read a book and I love toread, and I get lots of books
sent to me, like yours and manyothers, and I love to read them.
I used to be able to do that ina day.
If you gave me a book I couldhave read it and recorded with
you tomorrow.
But now I need a month, notonly because of time to actually
(23:07):
find time to read, but alsojust I read a lot slower than I
used to, and for me that part'sfrustrating because I used to be
able to like I've had so manybooks lately sent in and I had
to push podcasts out like monthsbecause I'm like I can't even
promise that I'll get to it yet.
And I love to read.
I like to read the book beforeI speak about the book, and
(23:28):
that's something that frustratesme.
But if you go back two yearsago, I couldn't read at all.
It's frustrating, but Icouldn't pick up a book two
years ago.
So it's a lot of progress whenyou think about it that way.
And you know, I thinkthe因prehension of our passions
change and I think that'ssomething that's important to
remember.
And sometimes our health doeshave to do with that.
(23:49):
For me, I had to retire from theshow-jumping career and then I
was dedicated to finding anothersport and I actually wrote
about this on Congestion Connectthe other day about how I spent
so much time finding somethingelse because I had this thing in
my mind, in the back of my mind, without realizing it, that if
(24:11):
I could get to the top ofanother sport, I'd get the same
happiness that I had before fromthe show-jumping.
And so I've spent three yearsdoing that almost four and now
I've gotten to the point whereI'm starting to realize that I
don't need that anymore.
You know, I don't feel thedesire to go out and or like six
days a week, I'd rather doother things like read a book.
(24:34):
I don't need to get betterevery day at a sport, I can just
enjoy my life.
But for a long time that's howmy brain was wired.
It was we're gonna do anothersport and we're gonna get to the
top I did it with archery toothat if we get really good
really fast, then we'll get todo what we always dreamed of.
You know, the whole Olympicthing, all that stuff in my
brain.
I don't think I ever admittedto that to myself before this
(24:57):
month actually, but it justshows that that who am I now is
constantly changing and it'sokay to kind of be confused by
it.
I was super confused when Iwent to our biking and was like
I don't really want to do thisright now, like I'm not enjoying
myself and for me life is allabout enjoyment.
So I've taken a little breakand I think that's okay.
(25:17):
And that's something that ishard to do.
Yes, because we think we'vecreated a new identity and then
all of a sudden it's like, oh,but that's not a part of it,
like is that still a part of me,is it not?
And you know it's somethingthat goes back and forth and you
know I really love your view ofthe now aspect to it, because
it really does change.
Now is different than tomorrowand I think it's important to
(25:40):
remember that and you've given alot of wonderful advice.
I strongly recommend to rootand to rise.
We will have it, access tolinks to it in our episode
description in our website.
But is there anything else youwould like to add before ending
today's episode?
Carole Starr (25:54):
As you were talking.
It made me think about, I think, the things that defined us
before, like you were justtalking about.
You know, like the sport or thereading.
I think those are theparticularly difficult things.
Like for me, that was likemusic reading was a thing that
we have to work through thegrief over how those things are
(26:15):
different in order to find thewho are we now, and that's part
of the process is workingthrough the grief over how those
things are different in ourlives.
For me, for a long time I had tolike let music go completely.
I couldn't do anything becauseit just brought up such heart
wrenching grief for me that Ijust I couldn't bear even doing
anything, even if it was alittle bit different, because it
(26:37):
was too much grief.
And that's okay if you have tojust let something go for a
while because it's too, becauseit's too much.
But sometimes things come back,you know, in different ways.
It's all a process and to knowthat where we are now is not
where you're going to be a yearfrom now, two years from now,
five years from now, 10 yearsfrom now, this is a, it is a
(27:00):
journey, it is a process and itis possible to to accept what's
happened to us and to moveforward into a different life
than the one that we thought wewere going to have.
Bella Paige (27:14):
Absolutely, and you know, my life looks drastically
different, like different thanwhat it would have been without
all this.
Me too, and yeah, and I thinkit's sometimes overwhelming if I
actually drew out one pathversus the other, but I do
really want to thank you so muchfor joining us today and
sharing a lot of your insightabout life after brain injury.
Carole Starr (27:36):
Thank you so much.
Bella Paige (27:38):
Need more than just this podcast.
Be sure to check out ourwebsite postconcussioninkcom, to
see how we can help you in yourpost concussion life, From a
support network to one-on-onecoaching.
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
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