August 17, 2023 • 26 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/
--
As we sit down with the remarkable author Jane Cawthorne, her candid discussion of living with post concussion syndrome takes us on a journey filled with resilience and strength.
We explore how life must be adjusted rather than always focusing on recovery, drawing on personal experiences and challenges. From forgetting the initial two years post concussion and learning to live with tinnitus to the understanding that adaptability is crucial, we share some valuable life lessons. We also delve into the world of women's concussion experiences, covering an array of topics from sports injuries to partner violence, and discuss 'Impact', a novel that allowed women writers to share their concussion stories.
Read IMPACT: Women Writing After Concussion: https://a.co/d/0cEn6q4
Mark as Played
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.
Do you feel constantlyoverwhelmed by your concussion
symptoms and life changes?
(01:10):
This is where Wombat.
Wombat can help you A newbreathwork and somatic therapy
app powered by neuroscience.
Let's slow down those racingthoughts and give ourselves the
ability to breathe.
Wombat is designed with anunderstanding of the impact of
trauma on individuals, ensuringa safe and supportive
environment for users dealingwith stress, anxiety or post
(01:34):
traumatic experiences.
Go to their website today athellowombatcom.
Welcome to episode number 113 ofthe post concussion podcast
with my self bell page andtoday's guest, Jane Cawthorne.
Jane writes about women on thebrink of transformation, with
Elaine Moran joining co-edit.
Impact women writing afterconcussion, which won the Book
(01:55):
Publishers Association ofAlberta's award for trade
nonfiction book of the year.
Jane's debut novel, pattersonHouse, came out in the fall of
2022.
The publication of this novelwas delayed because of the
concussion that is the subjectof her essay in Impact.
Jane's short stories and essaysare often anthologized and have
appeared in newspapers,magazines, literary journals and
(02:17):
academic journals.
Jane lives in Victoria, bc,where she might be working on
another novel.
Jane Cawthorne (02:22):
Welcome to the show.
Jane, thanks for having me.
Bella, I'm really glad to behere.
Bella Paige (02:27):
So, to start, do you want to tell us a little bit
about your concussion injuryitself?
Jane Cawthorne (02:32):
Well, the concussion injury that prompted
Impact was my fifth concussionand I think it was my fifth at
least fifth diagnosis and it wasthe result of a car accident
and my head actually did not hitanything, I just was jolted
(02:52):
forward and my brain hit myskull, and that was enough to
completely derail me.
Bella Paige (02:59):
And what kind of symptoms did you deal with after
that After?
Jane Cawthorne (03:03):
that I'm still dealing with symptoms.
It's been seven and seven and abit years, so it's an ongoing
thing.
But after that my biggestsymptoms were I couldn't see
properly, I had terribleheadaches, memory issues, I
couldn't focus or plan, I hadtinnitus.
I mean, the list can go on andon.
(03:25):
It's just an endless litany ofsymptoms.
Bella Paige (03:29):
It really doesn't end.
There's actually something thatyou mentioned in your book that
really struck with me, and inyour chapter, and it said that
people were mentioning thishappens all the time, and that's
something I got from people allthe time, from my headache
issues to my memory issues.
They'd be like oh, I getheadaches all the time.
Or oh, I've dealt withmigraines before.
You know those types ofcomments or just pretty much any
(03:52):
symptom I mentioned.
Somebody would say, oh, I'vedealt with that.
I'd be like oh, I've dealt withmigraines before.
Are you sure you have to like,are you sure, Like I know, you
get headaches, but like theseare a different level and trying
to get that across is reallyfrustrating.
And so how is your experiencewith that comment that people
love to make to survivors?
Jane Cawthorne (04:13):
People make that .
You're so right.
People make that comment allthe time and I even wrote about
this in my essay on Lost andimpact, the essay that's called
Lost.
People do say that all the timeand I know that they mean well,
so I don't usually take anybodyon about that, but in the essay
I make it really clear that no,you do not experience what I
(04:33):
experienced.
Have you recently forgotten howto turn on the kitchen faucet?
No, you probably have not.
Are you hiding out in adarkened room for days at a time
?
Probably not, and you're a lotyounger than me.
But so when I talk about memoryissues, people go oh, I forget
things all the time.
You know what?
I don't know it like this, youdon't forget the words that
(04:57):
you're trying to say, or I havea short term memory of it varies
between about two minutes and20 minutes.
So if somebody's giving medirections, for example and I
write about being lost all thetime in my essay if somebody's
giving me directions, they'lltell you three things at once,
or five things at once, and thenturn here and then turn there.
I remember the first thing andthat's it, and I have to repeat
(05:18):
it over and over and over tomyself to keep it in my head,
and then I do that thing, I getto that corner that they've told
me to get to, and then I haveto ask another person because
everything else is gone.
And that's the way it is for meand it's still like that.
My memory is beyond terrible,just absolutely beyond terrible.
So that's one of the lastingimpacts for me.
(05:40):
Other things have improveddramatically, like my eyesight.
I went to a neuro optometristand she helped my brain start
talking to my eyes again.
Now that's all resolved andlots of things have become
better, but the things that arestill going on are difficult.
For example, if I get stressed,it all comes back.
(06:00):
If I'm really busy, if there'sanything else going on, like the
most minor health issue willbring all my concussion symptoms
back, and one of those symptomsis stuttering, so that I find
very annoying.
Bella Paige (06:14):
It's really frustrating when you're trying
to get your point across and youcan't because you can't come up
with the words.
You mentioned the memory of thedirections.
That's how it worked for me.
You know how if you go to enterinto a new email on a new
website or something and it'slike gives you a five digit code
, and I used to have to do likeone digit and then go back and
(06:40):
then to another digit and goback, because I couldn't
remember the five numbersequence.
Like I'd be lucky if Iremembered the one number.
Sometimes I'd be like it's aneight, okay, go in, what was the
number?
And I have to go back.
And that was just.
Luckily, my memory has improveda lot, but I do remember doing
with that.
I went to school with no memory, so that was really frustrating
, but people will come up withpretty much anything where
(07:02):
they'll just be like oh, I'vedealt with that before.
And you mentioned stress.
That's something we actuallywere talking about in our
support group the other day ishow, when you get stressed, your
symptoms tend to flare up a lot, and sometimes symptoms you
almost forget about, and I thinkit's because some of us are
managing a lot of symptomswithout realizing it.
And then the other thing is itjust like your body gets
(07:24):
oversensitive.
I have a lot of chronic healthissues, that salt and stress not
being good for me.
Now the concussion definitelydoes flare up a lot, especially
my headaches.
My headaches do not like stressand I think that's just like I
can feel it if I'm stressed andmy emotional control kind of
goes out.
If I'm super stressed and I getthat specific headache, I know
(07:45):
where it comes from, but I'vebeen really good about that for
the last few years.
So there was one thing youmentioned We've talked about
memory a little bit and it'sabout that.
You lost your memory for twoyears.
So do you want to explain yourversion of how you lost your two
years of memory so thateveryone understands who hasn't
read the book yet?
Jane Cawthorne (08:05):
Oh, I don't even understand it though, so I
don't know if I can explain it.
I mean, when, about two yearsafter the accident, I'd had
tinnitus the whole time, but Ididn't know, that sounds
ridiculous because I was dealingwith so many other issues.
The last you know it was justso far down on the list.
(08:25):
And then one one night, in themiddle of the night I woke up
and I thought what's that sound?
And it wasn't a sound, it wassilence.
It was the first time I'd heardsilence in two years and I
thought, oh, oh, oh, oh, it's it.
And then I realized it.
All all the things came intoplace and I thought, oh, I've
had tinnitus all this time andeverybody had asked me if I had
(08:46):
tinnitus and I always said no,but apparently I did.
But when that happened, I kindof at the same time Forgot most
of the first two years of myconcussion, and I think that's
actually okay, because it wasn'tvery good, yeah, so I'm okay
with forgetting that.
Bella Paige (09:07):
That's why I wanted to bring it up.
Actually, first thing I'm gonnatalk about you're not knowing
about tinnitus, because I didthe same thing.
I didn't realize I had it.
I've talked about it on theshow before.
I was sitting in a classroomUniversity classroom with one of
my best friends and she'ssitting beside me and I'm
looking at her and she's justlike sitting there like normally
.
I'm like like looking around.
(09:28):
I'm like this is like horrific.
I'm looking across theclassroom no one's reacting and
I ask her and I'm like do younot hear this like horrendous
buzzing, like it's just likesounds like it's coming out of
the walls, and she's like no,I'm like, oh, okay, cool.
When I realized that a lot ofthe time when I've heard like a
(09:50):
ringing, I was the only personthat heard it.
I just thought it was like youknow, fans in it, like a big
building, a big Classroom.
You know it's an industrialtype building, so I just thought
it was like you know the heatunit, something, but no, as the
only person Noticing that.
Mine wasn't as constant asyours, though, but I know what
that's like, and you actuallymentioned exactly what I wanted
(10:12):
to talk about, and that's the,it being a good thing that you
lost some of that memory, and Italk about that because I have
lost.
So I dealt with PCS for aboutseven years and then now Chronic
illness from those for quite afew years.
I didn't realize that the PCSended and the chronic illness
started until this February,until I kind of figured out how
(10:33):
it really worked.
So when I started this house 15,so when I was 15, 16, 17, 18,
like those three, four years Ican't tell you what I did.
I can't tell you what happened.
I don't really have anymemories.
I have a few things that I kindof remember, but I don't
remember to the point where,like you know, facebook has
memories and things like that.
(10:53):
Those will come up and I willbe a photo with people and I
won't remember where it was.
I don't remember what we weredoing.
The one photo was in adifferent city and I didn't know
that until my girlfriendexplained it.
I've been reintroduced to people, like I've met people after
that and they were part of maybethose four years and I have to
remind myself who they werebecause I didn't meet them
(11:15):
before it and I met them duringit and I just don't have a good
memory of them, and so it's justkind of like this thing.
But I think my body has done itto protect myself, because it
was mentally really tough.
So once I got through like themental acceptance of what had
happened, I kind of closed thedoor.
And I kept it closed becausesometimes people, even my
(11:35):
siblings, will mention thingsfrom then and I'm like, oh yeah,
I kind of forgot about that.
And they're like, oh, how didyou forget?
It was like horrific, like youknow, like I barely got out of
bed, I couldn't do so manythings, and I'm like, yeah, but
like why would I want toremember that?
I was like my body hasdefinitely forgot how to protect
itself.
So I think that's really nicethat you kind of feel the same
(11:57):
way, despite how horrible.
Jane Cawthorne (12:00):
And you?
You just touched on somethingthat I think is really important
too.
You know, I say that, I saythat I'm I'm a lot better than I
was, but I wonder always howmuch of that is is Simply me
accepting where I actually amand not fighting against that
anymore.
I mean, it was one of thethings that we thought about a
(12:20):
lot when we were writing thebook and I wrote, I wrote the
book, I co-edited the book withElaine Moran, edie Moran, and we
had 21 women writers whocontributed to the project.
And and Actually doing thisbook was a lot like.
It is talking to you and go oh,you have that too.
Oh, you know, there's nothing,you know, fundamentally wrong
(12:42):
with me.
I'm not losing my mind, exceptfor the part of my mind.
I've actually lost part of our.
Our struggle writing the bookwas that many people you know
everybody wants a good newsstory about recovery, which is
you know, that's, that's greatwhen that happens, but not
everybody recovers fromeverything.
And you know you're a personwith a chronic illness.
You've just said and, and sohow do we write a book where we
(13:04):
allow people to Express what itis like to not recover?
And is this a book that thatpeople will actually read and,
yes, apparently it is becausewhat we found was, you know,
even more important thanrecovery sometimes is
adaptability, and we all havetimes in our lives where we have
(13:24):
to adapt to change, and changeis extremely difficult.
But I know that I will never bethe person I was.
That person is gone.
So who am I now and how do Iadapt to that new person that I
am and adapt to the life that Ihave?
So I can say that my symptomshave gone away by and large, but
the thing is I have changed mylife to accommodate my symptoms.
(13:47):
So if I have a period of stressor I have, as I do right now,
something very busy happening inmy family that takes a lot of
my time and attention, then mysymptoms just come back.
And it's not really thatthey've even come back.
They were there all along.
I was just managing them betterin a very slow-paced life that
I have had to adopt as I'veadapted to this injury.
(14:11):
So when that life becomesbusier, when there are more
demands on me, then I go.
Oh yeah, I still have all thisright.
Bella Paige (14:18):
Yeah, yeah, yeah.
It's really powerful and it'sreally important to notice the
adaptations.
It's one of my big focuses.
I do like a lot of one-on-onehelp with people and it's like
learning to live with it,because sometimes you have to
get to the point where you learnhow to live with a lot of these
symptoms.
It doesn't mean stop therapy,it doesn't mean stop trying to
get them to go away, butsometimes you still have to live
(14:39):
your life.
While you're doing that and Ireally want to talk about your
book we are going to take aquick break before we get into
the book.
Jane has been a part of awonderful book called Impact and
we are going to get into thatafter the break.
Cognitive FX is a researchdriven clinic that has
successfully treated thousandsof patients who have long
lasting symptoms fromconcussions or other brain
(15:01):
related injuries.
Cognitive FX has an innovativeapproach to recovery that uses
an advanced fMRI scan to map thefunction in your brain.
Treatment at Cognitive FX takesfive days to complete and uses
your fMRI scan as a guide andbaseline to ensure that your
treatment is personalized andeffective.
This means that you won't needto schedule and keep track of
(15:23):
multiple specialists, locations,dates, times or therapies,
because it will all be preparedfor you when you arrive.
Once you've completed theirtreatment, you receive a
personalized at home plan tocontinue your recovery and gain
access to their online patientportal that has instructional
videos and resources for yourcontinued recovery.
Conveniently, cognitive FX alsooffers free consultation, so
(15:46):
both you and the doctors canensure that treatment is a good
choice for you and your injury.
Visit their website atCognitiveFXUSAcom.
Don't delay your recovery anylonger.
Find solutions at Cognitive FXtoday.
Welcome back to the PostConcussion Podcast with my self
Bella Paige and today's guest,Jane Cawthorne.
(16:06):
So something I really wanted totalk about was impact women
writing after concussion awonderful book that I have
actually recently read, and Iwant to talk about what led you
to creating this book.
Jane Cawthorne (16:19):
Well, Elaine Warren and I wrote this book
together she's the co-editorwith me and we both had
concussions.
And we were sitting around herkitchen table one day and
talking about how there's justso little known about what we
were going through and there'sso little research and support.
(16:39):
And we wondered.
And we knew other women writerswho had concussions and we
wondered.
We began to wonder if this wasa topic that would be of
interest to people.
And it was of interest topeople and before we knew it we
started out with about sixwriters and before we knew it we
had 21 writers who actually hadmore than that, but if you had
(17:00):
to drop out because theyreconcast or whatever and they
were anxious and excited aboutthe opportunity to write about
their concussions and what hadhappened to them and to also
their creative practice.
So a lot of the work is abouthow they got back into writing,
how they recovered theircreative practice or, if they
(17:20):
recovered their creativepractice, how maybe that had
changed a lot.
We also knew that concussionsare very different for women
than they are for men and again,there was very little
information about that at thetime that we started writing
this.
In fact, the book was so novelthat it became the subject of a
(17:41):
big research project at StMichael's Hospital head injury
clinic in Toronto with the StMichael's Hospital Foundation.
Because there's just so littleknown about what happens,
especially to women.
And it is different for womenfor lots of reasons because
women are often caregivers atthe same time as they're needing
care.
Because the way we get ourconcussions is different.
(18:04):
For example, many women receivetheir concussions through
intimate partner violence, whichis something that is not talked
about enough.
And yeah, women haveconcussions because of sports
too.
But there's also all of theseother reasons.
So we were trying to give afull spectrum of what happens to
women when we put this booktogether, and it was a gift to
(18:27):
do it.
It was very hard.
It's always hard writing a book, but it's very hard writing a
book with 21 brain injuredpeople and you know we all
needed, very.
We all needed our own type ofaccommodation and, from me and
Elaine right down to everysingle contributor, we all had
(18:47):
particular things that werequired in order to get the
work done and it was really thebiggest learning experience I've
ever had.
And accommodation andaccessibility that was another
gift.
I've never had an experiencelike this where, no matter what
a person needed to make theirwork doable, a way was found to
(19:11):
have that happen, and that waswonderful.
I'll probably never haveanother experience like that.
Bella Paige (19:17):
Oh, it's great.
Do you want to?
I love the book, I love thedifferent stories.
You know, it really does showlike the interconnectedness of
people's experience, but thenalso how different they are as
well.
Because if you know differentlifestyles, different passions,
different symptoms, those typesof things, and then I always say
like your symptoms matter ontop of what your life is like.
(19:41):
If you have kids and they'rereally loud, then noise
sensitivity is going to be areally big deal for you.
It's really important.
It really depends on yourlifestyle a lot of the time, and
all of that ties into yourrecovery.
And so you mentioned theaccommodations.
Do you want to share what someof those might have been?
Jane Cawthorne (19:56):
I can for sure talk about my own.
I was having a lot of well, alot of people with confessions
have difficulty reading andwriting, and I had a tremendous
amount of difficulty reading andwriting.
I didn't even know if I wouldbe able to do this, and the same
was true of many of the writerswho signed on.
(20:17):
They said you know well, Ihaven't really tried to write
anything yet.
I don't know how it's going towork out.
I don't know if I'm going to beable to do it.
And we just say take your time.
You know there's no pressure.
It takes much time you need.
Do you want to record yourvoice?
Do you want to?
You know whatever, whatever isgoing to work for you.
(20:37):
And we worked on it.
We worked on it individuallywith each of the writers.
For me, it meant that Elainewas my editor.
It meant that I was workingvery closely with an editor,
probably more closely than I'veever worked with an editor
before, and I think that wastrue of a lot of the
(20:58):
contributors.
We were working very, veryclosely with them as editors and
trying as much as we possiblycould to extend deadlines as far
out as we could.
Bella Paige (21:07):
Yeah, I think sometimes people don't realize
what type of accommodationsthere are, like saying it out
loud instead of writing it down.
There's actually a lot of likewith technology now.
A lot of those things are a lotmore possible than they used to
be.
And in the book there's like acombination of poetry, essays,
like sort of short stories.
So do you want to talk aboutkind of how, was it just a
(21:30):
writer preference?
Did you want a combination ofit?
Was there a limit of how longsomebody's story could be?
I'm just kind of curious,because I think it's just super
wonderful that you got so manypeople to write.
And then also, you knowsurvivors.
They're dealing with a lot, aseveryone who's listening to this
podcast knows.
Jane Cawthorne (21:47):
We wanted every writer to do whatever felt best
for them Some of the people whowrote out of their usual genre
and they found that, all of asudden, poetry was what they
wanted to write.
That seemed to be how theircreative practice was returning,
and the last thing we wouldwant to do is squash any any
(22:13):
glimmer of, you know, creativityreturning.
So we were really open toabsolutely anything and there's
some very experimental writingin this book, and as a
Pasadena's piece in particularis so experimental, there's a,
there's a text block in themiddle of it which you won't
understand as a text block ifyou're listening to it on audio,
(22:35):
but when you see it in the bookit's an actual block of text
that's in grayscale.
It says day night, day night,day night, and goes on like that
, and then then there's littlebreaks where Something happens,
and it's in a different.
It's in a slightly differentcolor, and when I first saw that
(22:55):
, I was absolutely blown away,because that is exactly how it
felt to me to have a concussion,and Every once in a while I
would remember oh, somethinghappened that day, you know, or
something happened in this day.
Otherwise it was all just ablur.
And I was amazed when I saw thatand it was so creative and so
(23:17):
wonderful and I could saysomething Equally as as
complimentary about every singleperson's work in the book that
just blew me away, where I Isaid, yes, that is exactly what
it is like to have thisconcussion.
Bella Paige (23:29):
Yeah, I read the book.
I have notes I'm a big likenotes scribe person.
I have them within the wholebook of every single Writer's
stories, poetry, everything,just little things.
I'm like, oh, that's reallyimportant, just like really
things that I think peoplereally relate to.
All those things I evencommented on them.
I was like, oh, I deal withthat all the time and I'll write
(23:49):
that down and it just kind ofhelps me when I like go back
into the book and help others aswell.
And so you've shared a lot.
You've shared some of yourstory.
You've shared the process ofwriting impact women writing
after concussion, which is awonderful story, and there will
be links into how to get thatbook today.
Is there anything else you'dlike to add before we end
today's episode?
Jane Cawthorne (24:10):
I would like to say that it is very, very
difficult for people withinvisible disabilities to be
understood by the people whodon't have disabilities and who
don't have invisibledisabilities, and I am so
grateful to my co-editor, edieMoran Elaine, for undertaking
(24:36):
this project With me.
We couldn't have done itwithout each other and I'm so
grateful to all of thecontributors who I think were
Incredibly brave to be soforthright about what had
happened to them.
These are all people who areStill trying to work or still
working, still looking for newwork, and it's difficult to To
(25:00):
to admit that.
You know, when you're a writerlike for me it's very difficult
to admit that I still havetrouble reading and writing and
I'm a writer, so you know theseare these are tough things to
say, and they were incrediblybrave, incredibly forthright and
determined to tell theirstories and I think that they've
(25:22):
done other people withconcussion and brain injury a
great service and doing that,and I'm so grateful to them.
Bella Paige (25:29):
Well, I just want to thank you so much for sharing
your story here, as well ashelping so many others Share
theirs.
Jane Cawthorne (25:36):
Thank you, and thank you for what you're doing,
bella.
It's so important and it's it'sjust helps to build community
and make all of us feel likewe're not alone.
Bella Paige (25:48):
Need more than just this podcast.
Be sure to check out ourwebsite post concussion Inccom
To see how we can help you inyour post 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.
You
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.
Do you feel constantlyoverwhelmed by your concussion
symptoms and life changes?
(01:10):
This is where Wombat.
Wombat can help you A newbreathwork and somatic therapy
app powered by neuroscience.
Let's slow down those racingthoughts and give ourselves the
ability to breathe.
Wombat is designed with anunderstanding of the impact of
trauma on individuals, ensuringa safe and supportive
environment for users dealingwith stress, anxiety or post
(01:34):
traumatic experiences.
Go to their website today athellowombatcom.
Welcome to episode number 113 ofthe post concussion podcast
with my self bell page andtoday's guest, Jane Cawthorne.
Jane writes about women on thebrink of transformation, with
Elaine Moran joining co-edit.
Impact women writing afterconcussion, which won the Book
(01:55):
Publishers Association ofAlberta's award for trade
nonfiction book of the year.
Jane's debut novel, pattersonHouse, came out in the fall of
2022.
The publication of this novelwas delayed because of the
concussion that is the subjectof her essay in Impact.
Jane's short stories and essaysare often anthologized and have
appeared in newspapers,magazines, literary journals and
(02:17):
academic journals.
Jane lives in Victoria, bc,where she might be working on
another novel.
Jane Cawthorne (02:22):
Welcome to the show.
Jane, thanks for having me.
Bella, I'm really glad to behere.
Bella Paige (02:27):
So, to start, do you want to tell us a little bit
about your concussion injuryitself?
Jane Cawthorne (02:32):
Well, the concussion injury that prompted
Impact was my fifth concussionand I think it was my fifth at
least fifth diagnosis and it wasthe result of a car accident
and my head actually did not hitanything, I just was jolted
(02:52):
forward and my brain hit myskull, and that was enough to
completely derail me.
Bella Paige (02:59):
And what kind of symptoms did you deal with after
that After?
Jane Cawthorne (03:03):
that I'm still dealing with symptoms.
It's been seven and seven and abit years, so it's an ongoing
thing.
But after that my biggestsymptoms were I couldn't see
properly, I had terribleheadaches, memory issues, I
couldn't focus or plan, I hadtinnitus.
I mean, the list can go on andon.
(03:25):
It's just an endless litany ofsymptoms.
Bella Paige (03:29):
It really doesn't end.
There's actually something thatyou mentioned in your book that
really struck with me, and inyour chapter, and it said that
people were mentioning thishappens all the time, and that's
something I got from people allthe time, from my headache
issues to my memory issues.
They'd be like oh, I getheadaches all the time.
Or oh, I've dealt withmigraines before.
You know those types ofcomments or just pretty much any
(03:52):
symptom I mentioned.
Somebody would say, oh, I'vedealt with that.
I'd be like oh, I've dealt withmigraines before.
Are you sure you have to like,are you sure, Like I know, you
get headaches, but like theseare a different level and trying
to get that across is reallyfrustrating.
And so how is your experiencewith that comment that people
love to make to survivors?
Jane Cawthorne (04:13):
People make that .
You're so right.
People make that comment allthe time and I even wrote about
this in my essay on Lost andimpact, the essay that's called
Lost.
People do say that all the timeand I know that they mean well,
so I don't usually take anybodyon about that, but in the essay
I make it really clear that no,you do not experience what I
(04:33):
experienced.
Have you recently forgotten howto turn on the kitchen faucet?
No, you probably have not.
Are you hiding out in adarkened room for days at a time
?
Probably not, and you're a lotyounger than me.
But so when I talk about memoryissues, people go oh, I forget
things all the time.
You know what?
I don't know it like this, youdon't forget the words that
(04:57):
you're trying to say, or I havea short term memory of it varies
between about two minutes and20 minutes.
So if somebody's giving medirections, for example and I
write about being lost all thetime in my essay if somebody's
giving me directions, they'lltell you three things at once,
or five things at once, and thenturn here and then turn there.
I remember the first thing andthat's it, and I have to repeat
(05:18):
it over and over and over tomyself to keep it in my head,
and then I do that thing, I getto that corner that they've told
me to get to, and then I haveto ask another person because
everything else is gone.
And that's the way it is for meand it's still like that.
My memory is beyond terrible,just absolutely beyond terrible.
So that's one of the lastingimpacts for me.
(05:40):
Other things have improveddramatically, like my eyesight.
I went to a neuro optometristand she helped my brain start
talking to my eyes again.
Now that's all resolved andlots of things have become
better, but the things that arestill going on are difficult.
For example, if I get stressed,it all comes back.
(06:00):
If I'm really busy, if there'sanything else going on, like the
most minor health issue willbring all my concussion symptoms
back, and one of those symptomsis stuttering, so that I find
very annoying.
Bella Paige (06:14):
It's really frustrating when you're trying
to get your point across and youcan't because you can't come up
with the words.
You mentioned the memory of thedirections.
That's how it worked for me.
You know how if you go to enterinto a new email on a new
website or something and it'slike gives you a five digit code
, and I used to have to do likeone digit and then go back and
(06:40):
then to another digit and goback, because I couldn't
remember the five numbersequence.
Like I'd be lucky if Iremembered the one number.
Sometimes I'd be like it's aneight, okay, go in, what was the
number?
And I have to go back.
And that was just.
Luckily, my memory has improveda lot, but I do remember doing
with that.
I went to school with no memory, so that was really frustrating
, but people will come up withpretty much anything where
(07:02):
they'll just be like oh, I'vedealt with that before.
And you mentioned stress.
That's something we actuallywere talking about in our
support group the other day ishow, when you get stressed, your
symptoms tend to flare up a lot, and sometimes symptoms you
almost forget about, and I thinkit's because some of us are
managing a lot of symptomswithout realizing it.
And then the other thing is itjust like your body gets
(07:24):
oversensitive.
I have a lot of chronic healthissues, that salt and stress not
being good for me.
Now the concussion definitelydoes flare up a lot, especially
my headaches.
My headaches do not like stressand I think that's just like I
can feel it if I'm stressed andmy emotional control kind of
goes out.
If I'm super stressed and I getthat specific headache, I know
(07:45):
where it comes from, but I'vebeen really good about that for
the last few years.
So there was one thing youmentioned We've talked about
memory a little bit and it'sabout that.
You lost your memory for twoyears.
So do you want to explain yourversion of how you lost your two
years of memory so thateveryone understands who hasn't
read the book yet?
Jane Cawthorne (08:05):
Oh, I don't even understand it though, so I
don't know if I can explain it.
I mean, when, about two yearsafter the accident, I'd had
tinnitus the whole time, but Ididn't know, that sounds
ridiculous because I was dealingwith so many other issues.
The last you know it was justso far down on the list.
(08:25):
And then one one night, in themiddle of the night I woke up
and I thought what's that sound?
And it wasn't a sound, it wassilence.
It was the first time I'd heardsilence in two years and I
thought, oh, oh, oh, oh, it's it.
And then I realized it.
All all the things came intoplace and I thought, oh, I've
had tinnitus all this time andeverybody had asked me if I had
(08:46):
tinnitus and I always said no,but apparently I did.
But when that happened, I kindof at the same time Forgot most
of the first two years of myconcussion, and I think that's
actually okay, because it wasn'tvery good, yeah, so I'm okay
with forgetting that.
Bella Paige (09:07):
That's why I wanted to bring it up.
Actually, first thing I'm gonnatalk about you're not knowing
about tinnitus, because I didthe same thing.
I didn't realize I had it.
I've talked about it on theshow before.
I was sitting in a classroomUniversity classroom with one of
my best friends and she'ssitting beside me and I'm
looking at her and she's justlike sitting there like normally
.
I'm like like looking around.
(09:28):
I'm like this is like horrific.
I'm looking across theclassroom no one's reacting and
I ask her and I'm like do younot hear this like horrendous
buzzing, like it's just likesounds like it's coming out of
the walls, and she's like no,I'm like, oh, okay, cool.
When I realized that a lot ofthe time when I've heard like a
(09:50):
ringing, I was the only personthat heard it.
I just thought it was like youknow, fans in it, like a big
building, a big Classroom.
You know it's an industrialtype building, so I just thought
it was like you know the heatunit, something, but no, as the
only person Noticing that.
Mine wasn't as constant asyours, though, but I know what
that's like, and you actuallymentioned exactly what I wanted
(10:12):
to talk about, and that's the,it being a good thing that you
lost some of that memory, and Italk about that because I have
lost.
So I dealt with PCS for aboutseven years and then now Chronic
illness from those for quite afew years.
I didn't realize that the PCSended and the chronic illness
started until this February,until I kind of figured out how
(10:33):
it really worked.
So when I started this house 15,so when I was 15, 16, 17, 18,
like those three, four years Ican't tell you what I did.
I can't tell you what happened.
I don't really have anymemories.
I have a few things that I kindof remember, but I don't
remember to the point where,like you know, facebook has
memories and things like that.
(10:53):
Those will come up and I willbe a photo with people and I
won't remember where it was.
I don't remember what we weredoing.
The one photo was in adifferent city and I didn't know
that until my girlfriendexplained it.
I've been reintroduced to people, like I've met people after
that and they were part of maybethose four years and I have to
remind myself who they werebecause I didn't meet them
(11:15):
before it and I met them duringit and I just don't have a good
memory of them, and so it's justkind of like this thing.
But I think my body has done itto protect myself, because it
was mentally really tough.
So once I got through like themental acceptance of what had
happened, I kind of closed thedoor.
And I kept it closed becausesometimes people, even my
(11:35):
siblings, will mention thingsfrom then and I'm like, oh yeah,
I kind of forgot about that.
And they're like, oh, how didyou forget?
It was like horrific, like youknow, like I barely got out of
bed, I couldn't do so manythings, and I'm like, yeah, but
like why would I want toremember that?
I was like my body hasdefinitely forgot how to protect
itself.
So I think that's really nicethat you kind of feel the same
(11:57):
way, despite how horrible.
Jane Cawthorne (12:00):
And you?
You just touched on somethingthat I think is really important
too.
You know, I say that, I saythat I'm I'm a lot better than I
was, but I wonder always howmuch of that is is Simply me
accepting where I actually amand not fighting against that
anymore.
I mean, it was one of thethings that we thought about a
(12:20):
lot when we were writing thebook and I wrote, I wrote the
book, I co-edited the book withElaine Moran, edie Moran, and we
had 21 women writers whocontributed to the project.
And and Actually doing thisbook was a lot like.
It is talking to you and go oh,you have that too.
Oh, you know, there's nothing,you know, fundamentally wrong
(12:42):
with me.
I'm not losing my mind, exceptfor the part of my mind.
I've actually lost part of our.
Our struggle writing the bookwas that many people you know
everybody wants a good newsstory about recovery, which is
you know, that's, that's greatwhen that happens, but not
everybody recovers fromeverything.
And you know you're a personwith a chronic illness.
You've just said and, and sohow do we write a book where we
(13:04):
allow people to Express what itis like to not recover?
And is this a book that thatpeople will actually read and,
yes, apparently it is becausewhat we found was, you know,
even more important thanrecovery sometimes is
adaptability, and we all havetimes in our lives where we have
(13:24):
to adapt to change, and changeis extremely difficult.
But I know that I will never bethe person I was.
That person is gone.
So who am I now and how do Iadapt to that new person that I
am and adapt to the life that Ihave?
So I can say that my symptomshave gone away by and large, but
the thing is I have changed mylife to accommodate my symptoms.
(13:47):
So if I have a period of stressor I have, as I do right now,
something very busy happening inmy family that takes a lot of
my time and attention, then mysymptoms just come back.
And it's not really thatthey've even come back.
They were there all along.
I was just managing them betterin a very slow-paced life that
I have had to adopt as I'veadapted to this injury.
(14:11):
So when that life becomesbusier, when there are more
demands on me, then I go.
Oh yeah, I still have all thisright.
Bella Paige (14:18):
Yeah, yeah, yeah.
It's really powerful and it'sreally important to notice the
adaptations.
It's one of my big focuses.
I do like a lot of one-on-onehelp with people and it's like
learning to live with it,because sometimes you have to
get to the point where you learnhow to live with a lot of these
symptoms.
It doesn't mean stop therapy,it doesn't mean stop trying to
get them to go away, butsometimes you still have to live
(14:39):
your life.
While you're doing that and Ireally want to talk about your
book we are going to take aquick break before we get into
the book.
Jane has been a part of awonderful book called Impact and
we are going to get into thatafter the break.
Cognitive FX is a researchdriven clinic that has
successfully treated thousandsof patients who have long
lasting symptoms fromconcussions or other brain
(15:01):
related injuries.
Cognitive FX has an innovativeapproach to recovery that uses
an advanced fMRI scan to map thefunction in your brain.
Treatment at Cognitive FX takesfive days to complete and uses
your fMRI scan as a guide andbaseline to ensure that your
treatment is personalized andeffective.
This means that you won't needto schedule and keep track of
(15:23):
multiple specialists, locations,dates, times or therapies,
because it will all be preparedfor you when you arrive.
Once you've completed theirtreatment, you receive a
personalized at home plan tocontinue your recovery and gain
access to their online patientportal that has instructional
videos and resources for yourcontinued recovery.
Conveniently, cognitive FX alsooffers free consultation, so
(15:46):
both you and the doctors canensure that treatment is a good
choice for you and your injury.
Visit their website atCognitiveFXUSAcom.
Don't delay your recovery anylonger.
Find solutions at Cognitive FXtoday.
Welcome back to the PostConcussion Podcast with my self
Bella Paige and today's guest,Jane Cawthorne.
(16:06):
So something I really wanted totalk about was impact women
writing after concussion awonderful book that I have
actually recently read, and Iwant to talk about what led you
to creating this book.
Jane Cawthorne (16:19):
Well, Elaine Warren and I wrote this book
together she's the co-editorwith me and we both had
concussions.
And we were sitting around herkitchen table one day and
talking about how there's justso little known about what we
were going through and there'sso little research and support.
(16:39):
And we wondered.
And we knew other women writerswho had concussions and we
wondered.
We began to wonder if this wasa topic that would be of
interest to people.
And it was of interest topeople and before we knew it we
started out with about sixwriters and before we knew it we
had 21 writers who actually hadmore than that, but if you had
(17:00):
to drop out because theyreconcast or whatever and they
were anxious and excited aboutthe opportunity to write about
their concussions and what hadhappened to them and to also
their creative practice.
So a lot of the work is abouthow they got back into writing,
how they recovered theircreative practice or, if they
(17:20):
recovered their creativepractice, how maybe that had
changed a lot.
We also knew that concussionsare very different for women
than they are for men and again,there was very little
information about that at thetime that we started writing
this.
In fact, the book was so novelthat it became the subject of a
(17:41):
big research project at StMichael's Hospital head injury
clinic in Toronto with the StMichael's Hospital Foundation.
Because there's just so littleknown about what happens,
especially to women.
And it is different for womenfor lots of reasons because
women are often caregivers atthe same time as they're needing
care.
Because the way we get ourconcussions is different.
(18:04):
For example, many women receivetheir concussions through
intimate partner violence, whichis something that is not talked
about enough.
And yeah, women haveconcussions because of sports
too.
But there's also all of theseother reasons.
So we were trying to give afull spectrum of what happens to
women when we put this booktogether, and it was a gift to
(18:27):
do it.
It was very hard.
It's always hard writing a book, but it's very hard writing a
book with 21 brain injuredpeople and you know we all
needed, very.
We all needed our own type ofaccommodation and, from me and
Elaine right down to everysingle contributor, we all had
(18:47):
particular things that werequired in order to get the
work done and it was really thebiggest learning experience I've
ever had.
And accommodation andaccessibility that was another
gift.
I've never had an experiencelike this where, no matter what
a person needed to make theirwork doable, a way was found to
(19:11):
have that happen, and that waswonderful.
I'll probably never haveanother experience like that.
Bella Paige (19:17):
Oh, it's great.
Do you want to?
I love the book, I love thedifferent stories.
You know, it really does showlike the interconnectedness of
people's experience, but thenalso how different they are as
well.
Because if you know differentlifestyles, different passions,
different symptoms, those typesof things, and then I always say
like your symptoms matter ontop of what your life is like.
(19:41):
If you have kids and they'rereally loud, then noise
sensitivity is going to be areally big deal for you.
It's really important.
It really depends on yourlifestyle a lot of the time, and
all of that ties into yourrecovery.
And so you mentioned theaccommodations.
Do you want to share what someof those might have been?
Jane Cawthorne (19:56):
I can for sure talk about my own.
I was having a lot of well, alot of people with confessions
have difficulty reading andwriting, and I had a tremendous
amount of difficulty reading andwriting.
I didn't even know if I wouldbe able to do this, and the same
was true of many of the writerswho signed on.
(20:17):
They said you know well, Ihaven't really tried to write
anything yet.
I don't know how it's going towork out.
I don't know if I'm going to beable to do it.
And we just say take your time.
You know there's no pressure.
It takes much time you need.
Do you want to record yourvoice?
Do you want to?
You know whatever, whatever isgoing to work for you.
(20:37):
And we worked on it.
We worked on it individuallywith each of the writers.
For me, it meant that Elainewas my editor.
It meant that I was workingvery closely with an editor,
probably more closely than I'veever worked with an editor
before, and I think that wastrue of a lot of the
(20:58):
contributors.
We were working very, veryclosely with them as editors and
trying as much as we possiblycould to extend deadlines as far
out as we could.
Bella Paige (21:07):
Yeah, I think sometimes people don't realize
what type of accommodationsthere are, like saying it out
loud instead of writing it down.
There's actually a lot of likewith technology now.
A lot of those things are a lotmore possible than they used to
be.
And in the book there's like acombination of poetry, essays,
like sort of short stories.
So do you want to talk aboutkind of how, was it just a
(21:30):
writer preference?
Did you want a combination ofit?
Was there a limit of how longsomebody's story could be?
I'm just kind of curious,because I think it's just super
wonderful that you got so manypeople to write.
And then also, you knowsurvivors.
They're dealing with a lot, aseveryone who's listening to this
podcast knows.
Jane Cawthorne (21:47):
We wanted every writer to do whatever felt best
for them Some of the people whowrote out of their usual genre
and they found that, all of asudden, poetry was what they
wanted to write.
That seemed to be how theircreative practice was returning,
and the last thing we wouldwant to do is squash any any
(22:13):
glimmer of, you know, creativityreturning.
So we were really open toabsolutely anything and there's
some very experimental writingin this book, and as a
Pasadena's piece in particularis so experimental, there's a,
there's a text block in themiddle of it which you won't
understand as a text block ifyou're listening to it on audio,
(22:35):
but when you see it in the bookit's an actual block of text
that's in grayscale.
It says day night, day night,day night, and goes on like that
, and then then there's littlebreaks where Something happens,
and it's in a different.
It's in a slightly differentcolor, and when I first saw that
(22:55):
, I was absolutely blown away,because that is exactly how it
felt to me to have a concussion,and Every once in a while I
would remember oh, somethinghappened that day, you know, or
something happened in this day.
Otherwise it was all just ablur.
And I was amazed when I saw thatand it was so creative and so
(23:17):
wonderful and I could saysomething Equally as as
complimentary about every singleperson's work in the book that
just blew me away, where I Isaid, yes, that is exactly what
it is like to have thisconcussion.
Bella Paige (23:29):
Yeah, I read the book.
I have notes I'm a big likenotes scribe person.
I have them within the wholebook of every single Writer's
stories, poetry, everything,just little things.
I'm like, oh, that's reallyimportant, just like really
things that I think peoplereally relate to.
All those things I evencommented on them.
I was like, oh, I deal withthat all the time and I'll write
(23:49):
that down and it just kind ofhelps me when I like go back
into the book and help others aswell.
And so you've shared a lot.
You've shared some of yourstory.
You've shared the process ofwriting impact women writing
after concussion, which is awonderful story, and there will
be links into how to get thatbook today.
Is there anything else you'dlike to add before we end
today's episode?
Jane Cawthorne (24:10):
I would like to say that it is very, very
difficult for people withinvisible disabilities to be
understood by the people whodon't have disabilities and who
don't have invisibledisabilities, and I am so
grateful to my co-editor, edieMoran Elaine, for undertaking
(24:36):
this project With me.
We couldn't have done itwithout each other and I'm so
grateful to all of thecontributors who I think were
Incredibly brave to be soforthright about what had
happened to them.
These are all people who areStill trying to work or still
working, still looking for newwork, and it's difficult to To
(25:00):
to admit that.
You know, when you're a writerlike for me it's very difficult
to admit that I still havetrouble reading and writing and
I'm a writer, so you know theseare these are tough things to
say, and they were incrediblybrave, incredibly forthright and
determined to tell theirstories and I think that they've
(25:22):
done other people withconcussion and brain injury a
great service and doing that,and I'm so grateful to them.
Bella Paige (25:29):
Well, I just want to thank you so much for sharing
your story here, as well ashelping so many others Share
theirs.
Jane Cawthorne (25:36):
Thank you, and thank you for what you're doing,
bella.
It's so important and it's it'sjust helps to build community
and make all of us feel likewe're not alone.
Bella Paige (25:48):
Need more than just this podcast.
Be sure to check out ourwebsite post concussion Inccom
To see how we can help you inyour post 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.
You
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Therapy Gecko
An unlicensed lizard psychologist travels the universe talking to strangers about absolutely nothing. TO CALL THE GECKO: follow me on https://www.twitch.tv/lyleforever to get a notification for when I am taking calls. I am usually live Mondays, Wednesdays, and Fridays but lately a lot of other times too. I am a gecko.