June 27, 2023 • 21 mins
Today is the end of season one, our 15th episode. We talk about why some parents of children who have suffered a stroke feel like they don't fit in and provide an analogy that hopefully will change that mindset. Our guests today are AVM Brain bleed survivors Kyler Lewis and Ashley Lindsey who talk about what it is like to deal with brain vessel disease. We end the podcast going over our last chapter of our focus book, Suffer strong where Jay talks about "The Unknown" and we learn about the importance of hope when suffering and finding bravery to illuminate the darkness and uncover the treasures hidden there.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Raylene Lewis (00:02):
Hi there, and thank you for joining us on AVM
Alliance, a pediatric strokepodcast for families and friends
whose lives have been affectedby traumatic brain injury, brain
vessel disease, or stroke.
The purpose of this podcast isto focus on the kid side of
brain injury with honest TalkNews information and discussion
for our community.
(00:23):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
This episode is very special tome personally because it marks a
milestone, a promise that I madeto myself.
(00:45):
When I started this podcast, Itold myself I would keep going
no matter what, until I hadproduced 15 episodes and walked
listeners through all theimportant healing information,
and our focus books sufferstrong.
Today is the end of season one,my 15th episode, and I
absolutely saved the best guestsfor last.
(01:07):
But before I get started withtoday's interview, I wanted to
bring up a reoccurring theme.
I have noticed in parents whoare dealing with brain vessel
disease and stroke.
I have heard a lot of voices.
Say, I feel like I don't fit inwith other brain, a v m, brain
vessel disease, stroke parentsbecause, and that's usually
followed with things like, mykid doesn't have a risk of bleed
(01:29):
anymore.
My kid is at risk for anotherstroke.
My kid has more or less deficitsthan everyone I see.
Or because now I'm the parent ofan angel.
But I want you to think of itthis way, and please totally
forgive the analogy because Iwrote this way before all of the
(01:49):
news stuff with the TitanSubmarine.
We were all living life on theTitanic, cruising right along,
having no idea about thepediatric stroke aneurysm or AVM
iceberg.
Our ship was about to hit, andwhen the iceberg hit, we had to
suddenly abandon ship onliferafts.
Some of us made it to the raftwith our child, but some did not
(02:13):
make it to the raft and we wereleft floating without them.
Some of our kids made it to theraft, but suffered permanent
brain damage along the way.
The point is this happened toall of us and we are all in the
same situation together.
So for that reason alone, youabsolutely do belong.
And on that note, we now have asupport group that meets monthly
(02:36):
over Zoom.
And we would truly love to haveyou join us.
The AVM Alliance Podcast bringsall types of guests, and for my
season finale, today's guestsare extra special to me.
They are two AVM brain bleedsurvivors.
My son Kyler and his friendAshley, both Warriors, who
continue to beat the odds.
(02:58):
I am so excited today becausewith me is Ashley Lindsay and
Kyler Lewis, who are two gueststhat are very near and dear to
my heart.
I want to talk a little bitabout your story to begin with.
Ashley Lindsey (03:12):
The super short version of my story is I was 21.
When I had my AVM rupture and itresulted in removal about half
of my cerebellum with that wasremoval of my AVM itself.
(03:37):
So now I'm just living with thedeficits that the bleed left me.
Raylene Lewis (03:45):
That's gotta be really hard.
I mean, one day you're.
Talking just fine.
There's no issues at all.
And the next day you're findingthat you're having to have
yourself in physical therapy andkind of relearn everything.
And I think that's really how itworks with abms.
It's like it just hits youovernight and changes your life
(04:07):
forever.
What's one thing that you wouldwant?
Parents to know or othersurvivors to know that you have
learned from your experience?
Ashley Lindsey (04:17):
I would say just that even though everything
moves relatively slowly, I'mthree years out and still seeing
improvements.
Every day.
Raylene Lewis (04:32):
How many hours of therapy have you done so far?
Ashley Lindsey (04:34):
A Ton! I've done every day from like nine to
five, physical, occupational,and speech therapy.
And then start in January, I, Icut back on therapy hours so
that I could enroll in schooland.
(04:58):
Spend time being a student.
Raylene Lewis (05:01):
Congratulations.
Back at a and m, right, which iswhere you were before the
rupture, right?
Yes.
Ashley Lindsey (05:09):
So I got to finish my junior year before my
rupture.
And so I just had the last year,of course.
Where
Raylene Lewis (05:22):
left?
Congratulations.
Now, Kyle, your story is alittle bit different in that you
had.
Bleed at age 15, but it was notmassive.
It was a smaller bleed.
Can you tell me a little bitabout your story?
Kyler Lewis (05:39):
Sure.
So I had a stroke at 15, but mystroke, it bled into the
ventricle, so I got super lucky,so it didn't spread through all
out my brain.
Raylene Lewis (05:50):
And Ashley was lucky you could say, because
when she had her event, was ableto have her a v m removed as
part of her surgery, which,which saved her life.
But you had a completelydifferent outcome.
Can you tell me a little bitabout
Kyler Lewis (06:04):
that?
My outcome was whenever theyfound out about my avm, we had
to figure out.
What solution they were going todo to treat it.
So I did gamma knife radiationchemo, lots of physical and.
Occupational and speech therapy,but not as much as Ashley.
Raylene Lewis (06:26):
The biggest difference, I think, with you is
that when we discovered your a vm, it was a large grade.
Some doctors said it was a four.
Others said, no, it's, it's afive.
I had always thought that it wasabout six and a half
centimeters, which is.
Know it was huge.
It was about the size of achicken's egg, but when I saw
the last reports, it turned outit was, it was even bigger than
(06:47):
that.
It was over seven centimeters.
And so with an ABM that size,you can't remove it.
Surgery's not an option.
So gamma knife radiation wasreally the only choice that we
had.
And I think maybe different forsome is that a lot of the issues
that you dealt with were one.
Because the AVM was so large tobegin with, it was putting a lot
(07:11):
of pressure on your brain andcausing problems that it did
damage from something that'scalled the steel effect.
And the steal effect is when theAVM takes.
Blood from good brain tissue andkind of steals it.
And so that causes brain tissuedamage around the avm.
But also just the fact that itwas putting pressure that you
(07:34):
had this really big mass thatwas putting pressure on
surrounding tissue and it wascutting off, you know, oxygen
and blood to to tissue as well.
So for you, I think yourdeficit.
Kind of started a little bitmore slowly and we didn't know
what was causing the problemuntil you had the, the bleed
because your AVM was not.
(07:55):
Removable.
We had the gamma knife
Kyler Lewis (07:57):
radiation.
My reaction to gamma kniferadiation was not very common
and it kind of like overdid it,and so I had to go on steroids
for quite a long time.
I hated the steroids.
I told my mom that if I didn't,my face did not go back to
normal, that I was gettingplastic surgery because I
Raylene Lewis (08:20):
hated the way I looked.
Yeah, the steroids made youpretty puffy.
Something that's called.
Face not fun, but you guys bothhave overcome a lot of
challenges, I think, that havebeen thrown your way.
What's a different way that youthink about life now?
I would
Ashley Lindsey (08:35):
say that if anything, This has pushed me to
be more of an independent personbecause obviously I have to rely
on the others for quite a bit.
But if.
I can do something for myself,then that is something I want to
(09:00):
pursue.
Raylene Lewis (09:02):
Well, and speaking of that, huge kudos to
you because as part of yourtherapy, you have been doing
driving, right?
Yes.
Correct.
Oh my gosh.
Okay.
So tell me a little bit aboutthat, because a lot of people, I
think would think, oh my gosh,if you had a rupture in your
cerebellum and you can't use,you know, your hands like normal
(09:22):
and your feet like normal, howon earth can you drive?
How does it work?
So.
Ashley Lindsey (09:28):
Since I have closeness it my feet, I have to
use hand controls instead ofpedals.
And there's one lever that isfor gas or brake, and then I
attaches spinner, not, not tothe steering wheel.
(09:52):
So I can do full rotations withone hand.
The major challenge has been myrichest processing speed because
that's obviously, A hazard whendriving as I'm just getting more
(10:14):
used to things, if they'rebecoming more of a habit rather
than a processing
Raylene Lewis (10:23):
and then makes sense.
Now, Kyler, you had to gothrough some driving therapy as
well.
So my
Kyler Lewis (10:30):
driving therapy was kind of like a video game, so
they put me on this machine.
It was made by Ford.
And it was like a drivingsimulator.
So they would have three screensall around me and the seats.
They even had a radio airconditioning.
I mean, it was a real wheel.
(10:51):
It was like a video game.
And so, I would drive on it andI crashed a couple times.
Raylene Lewis (10:59):
So my, my favorite like telling on you a
little bit was that when we weredoing this therapy you got
really cocky on it that like youdidn't need it and that, you
know Right.
You knew how to drive.
It was great.
And the therapist that washandling all the simulations was
like, oh, okay.
Yeah.
You know, that's great.
(11:19):
Like she didn't argue with himwhen he was being all cocky, and
then she put in a simulationwhere the people and the other
cars don't follow the rules thatthey're supposed.
She didn't tell me
Kyler Lewis (11:31):
that.
She did not tell me that.
Raylene Lewis (11:33):
No, she didn't.
She just hit play and then, andthen you were like, wait a
minute.
He came in my lane and he didn'tsignal, and bam, you crashed
because she was trying to tellyou that you have to be prepared
for all situations.
You can't just always expect thedrivers around you to do what
they're supposed to.
Okay.
Ashley Lindsey (11:52):
There's the.
I didn't use a driving semilater, but through all my
therapy was around some, eventhe therapist that were able to
use it where like, This thing isincredibly difficult.
Raylene Lewis (12:16):
I think people who are not used to going and
attending therapy would bereally surprised how much hard
work it is, even if you have hadno brain issue or injury at all.
I remember.
When I was sitting with Kylerand they were working on
cognition, they had pictures ofobjects, and if the objects were
(12:39):
rotated a certain way, you hadto say, switch image is a
rotated version of the sameimage.
You know, things like that.
And there were quite a few timeswhen I missed them.
I was, you know, in my headwatching.
I was like, oh, nope, I got itreversed.
I got that one wrong.
What's one thing, what's, what'ssomething that you want people
to know in general?
(12:59):
I'll go ahead
Ashley Lindsey (13:00):
and say, just because I talk part ially Does
not mean my intellect is anyless, which is not a tender
thing to think about wheneveryou're having a conversation
(13:21):
with someone.
Raylene Lewis (13:23):
Absolutely, and I think that's something that a
lot of people who have aphasiaissues struggle with.
They are.
Just fine mentally, there's noissues.
But yet other people take forgranted that because they don't
speak at the same speed or thesame rate, that they're not the,
the same level of intellect.
(13:44):
How do you deal with that?
Ashley Lindsey (13:46):
Lots of people.
Some they make thereassumptions, but it's really
just a matter of getting to knowpeople.
And I.
Realize, just because you sounddifferent doesn't necessarily
(14:08):
mean that all the whole processis different.
Raylene Lewis (14:13):
Kyler, you've struggled with this too, but in
a bit of a different way.
People could not see your A V M,they could not see your
swelling, and for a largeportion of the time, you were
not in a wheelchair.
But when you didn't respond atthe same.
Level, like as fast, right?
As people expected, or you'vehad a lot of trouble focusing
(14:37):
like sounds, noises, things likethat have been difficult for
you.
What's one thing that you haveused to say that you just had a
brain injury?
Kyler Lewis (14:49):
I kind of just understand that they don't
understand.
Just because you can't seedeficits doesn't mean they don't
have any.
I mean, I kind of just explain.
I might not understand, or itmight take me a little while to
process this.
Sam helps me I guess you couldcall him an emotional support
animal as well as a service dogbecause he is definitely here
(15:12):
for me emotionally.
He will let me know and he'lllet my mom know if something's
wrong and he gets really
Raylene Lewis (15:18):
protective and well, and do you feel like Sam
Sam's makes you moreapproachable?
I think so.
Kyler Lewis (15:23):
I think, is he gonna a chick magnet?
Yes he is.
Ask Ashley.
Raylene Lewis (15:28):
Ashley, what do you think?
Ashley Lindsey (15:29):
I like Sam More than Kyler.
Oh my gosh.
Sam is so cute.
Raylene Lewis (15:37):
Yeah, he's now Ashley, you have grown.
With your therapy and got a newlove for plants.
Is that right?
Yes.
Ashley Lindsey (15:47):
I love to do all kinds of gardening.
My mom and I would visit gardensand nurseries a lot.
When I first got held at thehospital,
Raylene Lewis (16:04):
what is one thing that could help other a v M
survivors really figure out howto take a step forward in their
recovery?
I would
Ashley Lindsey (16:15):
say figuring out what you can do with your type
visits.
Once you figure out what you.
Can, can do, you can make abetter decision about what's
realistic for the future.
Raylene Lewis (16:37):
I think exploring and really focusing on what you
can do is so important because alot of people focus on what they
can't do.
So I think that's an excellentpoint.
And one thing that I'd like tojust say in general is I
personally do not have not had abrain injury.
Right?
But there are lots of thingsthat I can't do, and I think
(16:59):
that's the way it is witheverybody.
So maybe they're, they're newthings for some people, but
figuring out what you're good atand what you love is something
that applies to all of us aspeople.
And you've
Ashley Lindsey (17:13):
mentioned all of my planting.
I quickly learned that I couldcare for from a wheelchair.
That was definitely a focus onsomething I could do and
Raylene Lewis (17:31):
do well.
Kyler Lewis (17:32):
AVM is one of those things where I could go to
anyone right now and they'dprobably not know what it is.
I use my AVM to spreadawareness.
Raylene Lewis (17:41):
Yep.
Spreading awareness is superimportant.
Well, I just wanna thank you andI really appreciate your time
and I wish you both the very,very best and your recovery and
I can't wait to see what all youguys do.
Thank
Ashley Lindsey (17:55):
you.
Congratulations on finishing upyour season.
Raylene Lewis (18:02):
Thank you.
In the final chapter of ourfocus book, suffer Strong, Jay
talks about things outside ofour control, the unknown.
Today could be the best day, theworst day, or the last day of
our lives, but it does not meanwe need to live in fear.
Instead, it is important tofocus on what we know to be true
(18:23):
and who the important people arearound us.
We also need to help each otherto remember to focus on what
matters most.
Sometimes we have to remindourselves about things we know
for sure over and over beforeour hearts are ready to believe.
Jay points out that even thoughwe are powerless in some ways to
(18:44):
the unknown, we are definitelynot helpless.
He also points out how somepeople will try to bargain with
God, but a good deal requirestwo signatures, and any
bargaining we try will only haveour own, so no deals can ever be
made.
Jay quotes Bloom who said, neverbe afraid to trust an unknown
(19:05):
future to a known Godpersonally.
I had trouble when I read thisbecause it was one of the last
things Carla's friend Eden wroteto him before having an another
brain bleed and gaining herwings.
But I have come to learn that asJay says, hope is a future
promise lived out in the presentthat is not dependent on our
(19:28):
ability to feel it, to keep itgoing.
We have all heard the phrasethat life defines us, but
suffering strong can redefineus.
And hope is a very healingthing.
Each one of us only gets onelife to live, and it's up to us
to live it well to the very end.
As you have heard me say before,one of my favorite sayings is
(19:52):
when it rains, look forrainbows.
And when it's dark, look forstars.
Find the bravery to illuminatethe darkness and uncover every
last bit of treasure hiddenthere, even in suffering.
Search for and find the hope.
Today's quote is by CS Lewis.
(20:14):
What draws people to be friendsis that they see the same truth.
They share it.
I always like to end our timetogether with a motivational
song recommendation.
I don't play the song because ofcopyright laws, but there have
been many times on this journeywhere a song has really spoken
out to me and helped me with myday.
(20:34):
Today I'm recommending you checkout Believer by Imagine Dragons
from their 2017 album Evolve.
It is one of Kyle's favoritesongs, and it's a song
reflecting on specific things inlife that are painful, facing
your inner soul and finding aplace of peace and
self-confidence.
A lot of the lyrics truly hithome.
(20:56):
And as always, if you havequestions, have a topic you
would like to hear about, or agreat song or motivational
quote.
Don't be shy.
Share it in the comments and letus know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care y'all.
Hi there, and thank you for joining us on AVM
Alliance, a pediatric strokepodcast for families and friends
whose lives have been affectedby traumatic brain injury, brain
vessel disease, or stroke.
The purpose of this podcast isto focus on the kid side of
brain injury with honest TalkNews information and discussion
for our community.
(00:23):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
This episode is very special tome personally because it marks a
milestone, a promise that I madeto myself.
(00:45):
When I started this podcast, Itold myself I would keep going
no matter what, until I hadproduced 15 episodes and walked
listeners through all theimportant healing information,
and our focus books sufferstrong.
Today is the end of season one,my 15th episode, and I
absolutely saved the best guestsfor last.
(01:07):
But before I get started withtoday's interview, I wanted to
bring up a reoccurring theme.
I have noticed in parents whoare dealing with brain vessel
disease and stroke.
I have heard a lot of voices.
Say, I feel like I don't fit inwith other brain, a v m, brain
vessel disease, stroke parentsbecause, and that's usually
followed with things like, mykid doesn't have a risk of bleed
(01:29):
anymore.
My kid is at risk for anotherstroke.
My kid has more or less deficitsthan everyone I see.
Or because now I'm the parent ofan angel.
But I want you to think of itthis way, and please totally
forgive the analogy because Iwrote this way before all of the
(01:49):
news stuff with the TitanSubmarine.
We were all living life on theTitanic, cruising right along,
having no idea about thepediatric stroke aneurysm or AVM
iceberg.
Our ship was about to hit, andwhen the iceberg hit, we had to
suddenly abandon ship onliferafts.
Some of us made it to the raftwith our child, but some did not
(02:13):
make it to the raft and we wereleft floating without them.
Some of our kids made it to theraft, but suffered permanent
brain damage along the way.
The point is this happened toall of us and we are all in the
same situation together.
So for that reason alone, youabsolutely do belong.
And on that note, we now have asupport group that meets monthly
(02:36):
over Zoom.
And we would truly love to haveyou join us.
The AVM Alliance Podcast bringsall types of guests, and for my
season finale, today's guestsare extra special to me.
They are two AVM brain bleedsurvivors.
My son Kyler and his friendAshley, both Warriors, who
continue to beat the odds.
(02:58):
I am so excited today becausewith me is Ashley Lindsay and
Kyler Lewis, who are two gueststhat are very near and dear to
my heart.
I want to talk a little bitabout your story to begin with.
Ashley Lindsey (03:12):
The super short version of my story is I was 21.
When I had my AVM rupture and itresulted in removal about half
of my cerebellum with that wasremoval of my AVM itself.
(03:37):
So now I'm just living with thedeficits that the bleed left me.
Raylene Lewis (03:45):
That's gotta be really hard.
I mean, one day you're.
Talking just fine.
There's no issues at all.
And the next day you're findingthat you're having to have
yourself in physical therapy andkind of relearn everything.
And I think that's really how itworks with abms.
It's like it just hits youovernight and changes your life
(04:07):
forever.
What's one thing that you wouldwant?
Parents to know or othersurvivors to know that you have
learned from your experience?
Ashley Lindsey (04:17):
I would say just that even though everything
moves relatively slowly, I'mthree years out and still seeing
improvements.
Every day.
Raylene Lewis (04:32):
How many hours of therapy have you done so far?
Ashley Lindsey (04:34):
A Ton! I've done every day from like nine to
five, physical, occupational,and speech therapy.
And then start in January, I, Icut back on therapy hours so
that I could enroll in schooland.
(04:58):
Spend time being a student.
Raylene Lewis (05:01):
Congratulations.
Back at a and m, right, which iswhere you were before the
rupture, right?
Yes.
Ashley Lindsey (05:09):
So I got to finish my junior year before my
rupture.
And so I just had the last year,of course.
Where
Raylene Lewis (05:22):
left?
Congratulations.
Now, Kyle, your story is alittle bit different in that you
had.
Bleed at age 15, but it was notmassive.
It was a smaller bleed.
Can you tell me a little bitabout your story?
Kyler Lewis (05:39):
Sure.
So I had a stroke at 15, but mystroke, it bled into the
ventricle, so I got super lucky,so it didn't spread through all
out my brain.
Raylene Lewis (05:50):
And Ashley was lucky you could say, because
when she had her event, was ableto have her a v m removed as
part of her surgery, which,which saved her life.
But you had a completelydifferent outcome.
Can you tell me a little bitabout
Kyler Lewis (06:04):
that?
My outcome was whenever theyfound out about my avm, we had
to figure out.
What solution they were going todo to treat it.
So I did gamma knife radiationchemo, lots of physical and.
Occupational and speech therapy,but not as much as Ashley.
Raylene Lewis (06:26):
The biggest difference, I think, with you is
that when we discovered your a vm, it was a large grade.
Some doctors said it was a four.
Others said, no, it's, it's afive.
I had always thought that it wasabout six and a half
centimeters, which is.
Know it was huge.
It was about the size of achicken's egg, but when I saw
the last reports, it turned outit was, it was even bigger than
(06:47):
that.
It was over seven centimeters.
And so with an ABM that size,you can't remove it.
Surgery's not an option.
So gamma knife radiation wasreally the only choice that we
had.
And I think maybe different forsome is that a lot of the issues
that you dealt with were one.
Because the AVM was so large tobegin with, it was putting a lot
(07:11):
of pressure on your brain andcausing problems that it did
damage from something that'scalled the steel effect.
And the steal effect is when theAVM takes.
Blood from good brain tissue andkind of steals it.
And so that causes brain tissuedamage around the avm.
But also just the fact that itwas putting pressure that you
(07:34):
had this really big mass thatwas putting pressure on
surrounding tissue and it wascutting off, you know, oxygen
and blood to to tissue as well.
So for you, I think yourdeficit.
Kind of started a little bitmore slowly and we didn't know
what was causing the problemuntil you had the, the bleed
because your AVM was not.
(07:55):
Removable.
We had the gamma knife
Kyler Lewis (07:57):
radiation.
My reaction to gamma kniferadiation was not very common
and it kind of like overdid it,and so I had to go on steroids
for quite a long time.
I hated the steroids.
I told my mom that if I didn't,my face did not go back to
normal, that I was gettingplastic surgery because I
Raylene Lewis (08:20):
hated the way I looked.
Yeah, the steroids made youpretty puffy.
Something that's called.
Face not fun, but you guys bothhave overcome a lot of
challenges, I think, that havebeen thrown your way.
What's a different way that youthink about life now?
I would
Ashley Lindsey (08:35):
say that if anything, This has pushed me to
be more of an independent personbecause obviously I have to rely
on the others for quite a bit.
But if.
I can do something for myself,then that is something I want to
(09:00):
pursue.
Raylene Lewis (09:02):
Well, and speaking of that, huge kudos to
you because as part of yourtherapy, you have been doing
driving, right?
Yes.
Correct.
Oh my gosh.
Okay.
So tell me a little bit aboutthat, because a lot of people, I
think would think, oh my gosh,if you had a rupture in your
cerebellum and you can't use,you know, your hands like normal
(09:22):
and your feet like normal, howon earth can you drive?
How does it work?
So.
Ashley Lindsey (09:28):
Since I have closeness it my feet, I have to
use hand controls instead ofpedals.
And there's one lever that isfor gas or brake, and then I
attaches spinner, not, not tothe steering wheel.
(09:52):
So I can do full rotations withone hand.
The major challenge has been myrichest processing speed because
that's obviously, A hazard whendriving as I'm just getting more
(10:14):
used to things, if they'rebecoming more of a habit rather
than a processing
Raylene Lewis (10:23):
and then makes sense.
Now, Kyler, you had to gothrough some driving therapy as
well.
So my
Kyler Lewis (10:30):
driving therapy was kind of like a video game, so
they put me on this machine.
It was made by Ford.
And it was like a drivingsimulator.
So they would have three screensall around me and the seats.
They even had a radio airconditioning.
I mean, it was a real wheel.
(10:51):
It was like a video game.
And so, I would drive on it andI crashed a couple times.
Raylene Lewis (10:59):
So my, my favorite like telling on you a
little bit was that when we weredoing this therapy you got
really cocky on it that like youdidn't need it and that, you
know Right.
You knew how to drive.
It was great.
And the therapist that washandling all the simulations was
like, oh, okay.
Yeah.
You know, that's great.
(11:19):
Like she didn't argue with himwhen he was being all cocky, and
then she put in a simulationwhere the people and the other
cars don't follow the rules thatthey're supposed.
She didn't tell me
Kyler Lewis (11:31):
that.
She did not tell me that.
Raylene Lewis (11:33):
No, she didn't.
She just hit play and then, andthen you were like, wait a
minute.
He came in my lane and he didn'tsignal, and bam, you crashed
because she was trying to tellyou that you have to be prepared
for all situations.
You can't just always expect thedrivers around you to do what
they're supposed to.
Okay.
Ashley Lindsey (11:52):
There's the.
I didn't use a driving semilater, but through all my
therapy was around some, eventhe therapist that were able to
use it where like, This thing isincredibly difficult.
Raylene Lewis (12:16):
I think people who are not used to going and
attending therapy would bereally surprised how much hard
work it is, even if you have hadno brain issue or injury at all.
I remember.
When I was sitting with Kylerand they were working on
cognition, they had pictures ofobjects, and if the objects were
(12:39):
rotated a certain way, you hadto say, switch image is a
rotated version of the sameimage.
You know, things like that.
And there were quite a few timeswhen I missed them.
I was, you know, in my headwatching.
I was like, oh, nope, I got itreversed.
I got that one wrong.
What's one thing, what's, what'ssomething that you want people
to know in general?
(12:59):
I'll go ahead
Ashley Lindsey (13:00):
and say, just because I talk part ially Does
not mean my intellect is anyless, which is not a tender
thing to think about wheneveryou're having a conversation
(13:21):
with someone.
Raylene Lewis (13:23):
Absolutely, and I think that's something that a
lot of people who have aphasiaissues struggle with.
They are.
Just fine mentally, there's noissues.
But yet other people take forgranted that because they don't
speak at the same speed or thesame rate, that they're not the,
the same level of intellect.
(13:44):
How do you deal with that?
Ashley Lindsey (13:46):
Lots of people.
Some they make thereassumptions, but it's really
just a matter of getting to knowpeople.
And I.
Realize, just because you sounddifferent doesn't necessarily
(14:08):
mean that all the whole processis different.
Raylene Lewis (14:13):
Kyler, you've struggled with this too, but in
a bit of a different way.
People could not see your A V M,they could not see your
swelling, and for a largeportion of the time, you were
not in a wheelchair.
But when you didn't respond atthe same.
Level, like as fast, right?
As people expected, or you'vehad a lot of trouble focusing
(14:37):
like sounds, noises, things likethat have been difficult for
you.
What's one thing that you haveused to say that you just had a
brain injury?
Kyler Lewis (14:49):
I kind of just understand that they don't
understand.
Just because you can't seedeficits doesn't mean they don't
have any.
I mean, I kind of just explain.
I might not understand, or itmight take me a little while to
process this.
Sam helps me I guess you couldcall him an emotional support
animal as well as a service dogbecause he is definitely here
(15:12):
for me emotionally.
He will let me know and he'lllet my mom know if something's
wrong and he gets really
Raylene Lewis (15:18):
protective and well, and do you feel like Sam
Sam's makes you moreapproachable?
I think so.
Kyler Lewis (15:23):
I think, is he gonna a chick magnet?
Yes he is.
Ask Ashley.
Raylene Lewis (15:28):
Ashley, what do you think?
Ashley Lindsey (15:29):
I like Sam More than Kyler.
Oh my gosh.
Sam is so cute.
Raylene Lewis (15:37):
Yeah, he's now Ashley, you have grown.
With your therapy and got a newlove for plants.
Is that right?
Yes.
Ashley Lindsey (15:47):
I love to do all kinds of gardening.
My mom and I would visit gardensand nurseries a lot.
When I first got held at thehospital,
Raylene Lewis (16:04):
what is one thing that could help other a v M
survivors really figure out howto take a step forward in their
recovery?
I would
Ashley Lindsey (16:15):
say figuring out what you can do with your type
visits.
Once you figure out what you.
Can, can do, you can make abetter decision about what's
realistic for the future.
Raylene Lewis (16:37):
I think exploring and really focusing on what you
can do is so important because alot of people focus on what they
can't do.
So I think that's an excellentpoint.
And one thing that I'd like tojust say in general is I
personally do not have not had abrain injury.
Right?
But there are lots of thingsthat I can't do, and I think
(16:59):
that's the way it is witheverybody.
So maybe they're, they're newthings for some people, but
figuring out what you're good atand what you love is something
that applies to all of us aspeople.
And you've
Ashley Lindsey (17:13):
mentioned all of my planting.
I quickly learned that I couldcare for from a wheelchair.
That was definitely a focus onsomething I could do and
Raylene Lewis (17:31):
do well.
Kyler Lewis (17:32):
AVM is one of those things where I could go to
anyone right now and they'dprobably not know what it is.
I use my AVM to spreadawareness.
Raylene Lewis (17:41):
Yep.
Spreading awareness is superimportant.
Well, I just wanna thank you andI really appreciate your time
and I wish you both the very,very best and your recovery and
I can't wait to see what all youguys do.
Thank
Ashley Lindsey (17:55):
you.
Congratulations on finishing upyour season.
Raylene Lewis (18:02):
Thank you.
In the final chapter of ourfocus book, suffer Strong, Jay
talks about things outside ofour control, the unknown.
Today could be the best day, theworst day, or the last day of
our lives, but it does not meanwe need to live in fear.
Instead, it is important tofocus on what we know to be true
(18:23):
and who the important people arearound us.
We also need to help each otherto remember to focus on what
matters most.
Sometimes we have to remindourselves about things we know
for sure over and over beforeour hearts are ready to believe.
Jay points out that even thoughwe are powerless in some ways to
(18:44):
the unknown, we are definitelynot helpless.
He also points out how somepeople will try to bargain with
God, but a good deal requirestwo signatures, and any
bargaining we try will only haveour own, so no deals can ever be
made.
Jay quotes Bloom who said, neverbe afraid to trust an unknown
(19:05):
future to a known Godpersonally.
I had trouble when I read thisbecause it was one of the last
things Carla's friend Eden wroteto him before having an another
brain bleed and gaining herwings.
But I have come to learn that asJay says, hope is a future
promise lived out in the presentthat is not dependent on our
(19:28):
ability to feel it, to keep itgoing.
We have all heard the phrasethat life defines us, but
suffering strong can redefineus.
And hope is a very healingthing.
Each one of us only gets onelife to live, and it's up to us
to live it well to the very end.
As you have heard me say before,one of my favorite sayings is
(19:52):
when it rains, look forrainbows.
And when it's dark, look forstars.
Find the bravery to illuminatethe darkness and uncover every
last bit of treasure hiddenthere, even in suffering.
Search for and find the hope.
Today's quote is by CS Lewis.
(20:14):
What draws people to be friendsis that they see the same truth.
They share it.
I always like to end our timetogether with a motivational
song recommendation.
I don't play the song because ofcopyright laws, but there have
been many times on this journeywhere a song has really spoken
out to me and helped me with myday.
(20:34):
Today I'm recommending you checkout Believer by Imagine Dragons
from their 2017 album Evolve.
It is one of Kyle's favoritesongs, and it's a song
reflecting on specific things inlife that are painful, facing
your inner soul and finding aplace of peace and
self-confidence.
A lot of the lyrics truly hithome.
(20:56):
And as always, if you havequestions, have a topic you
would like to hear about, or agreat song or motivational
quote.
Don't be shy.
Share it in the comments and letus know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care y'all.
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