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/
--
Have you ever felt utterly transformed by time and the trials it brings?
Chaandani Khan returns with an open heart to share the complexities of her ongoing battle with post-concussion syndrome/persistent concussion symptoms. Her story is one that echoes throughout our community, resonating with the silent struggles and the profound shifts in identity that so many of us know all too well.
Chaandani's candid conversation about "micro struggles" and her journey of recovery offers a raw look into the ebbs and flows of navigating life post-injury. This episode is about the small breakthroughs that make a big difference, as we explore the vital importance of pausing to reflect on how far we've come.
LISTEN to Chaandani's previous episode: https://postconcussioninc.com/podcast/chaandani-khan
Find Show Notes, Transcript, & More: https://postconcussioninc.com/podcast
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Bella Paige (00:02):
Hi everyone.
I'm your host, Bella Paige, andafter suffering from
post-concussion syndrome foryears, it was time to do
something about it.
So welcome to thePost-Concussion Podcast, where
we dig deep into life when itdoesn't go back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:26):
The Post-Concussion Podcast isstrictly an information podcast
about concussions andpost-concussion 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.
(00:47):
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 episode number 128 ofthe Post-Concussion Podcast
(01:07):
with myself, Bella Paige andtoday's repeat guest, Chaandani
Khan.
We have another repeat guestthis week.
If you want to listen to herprevious episode, you have to
scroll or search for episodenumber 669, an incredible
episode on living in the grayspace and micro struggles.
Years ago from now, Chaandaniexperienced a concussion which
(01:29):
significantly changed her life.
She spent her time learningdifferent ways to heal and today
she is back to share how she'sbeen doing.
Welcome back, Chaandani, Thankyou.
So, to start, you have been aguest on the show before, but I
kind of want to get back intojust so anybody who hasn't heard
your past episode.
It is episode 69, while I will,of course, have given more
(01:51):
details of that before, just onyour concussion experience in
general, just a small backgroundon it of what you want to share
.
Chaandani Khan (01:58):
Sure, so I'm really excited to be back and
talking with you again.
So, again, thank you for that.
A little bit about theconcussion experience that I've
had and that I'm still workingthrough.
I was in a car accident in 2019, and so that is coming up to
about four and a half years ago,as of next month end of year, I
should say and it affected mein multiple ways, and so it
(02:22):
affected me cognitively,physically, emotionally as well
as behaviorally and so differenttypes of effects.
Just to kind of bring that tolife, I'd like to give a couple
of examples.
Cognitively, something I reallystruggled with was language
comprehension, as well as myfocus and attention.
There were lots of other piecesthere, but this is just to kind
(02:43):
of help people understand thesedifferent types or the different
ways that symptoms can show upin your life.
Physically, I had extreme dailyfatigue, which is something
that up until very recently, Iwas still swimming through very
murky waters up, as well, as Ihad heart rate variability
issues that really came intoplay when I was trying to be
(03:04):
physically active or even justwalk up small hills in the
sidewalk.
Emotionally, I experiencedanxiety, depression, PTSD, and
at that time, those were veryforeign concepts to me, as I
hadn't been in a situation ofthat level of struggle and pain,
I'd say, and emotionally I hada lot of anger and a lot of
(03:27):
sadness.
And one of the most challengingthings for me which I'm sure I
spoke to a bit last time atleast, was the concept of loss
and just losing everything thatyou thought you were, that you
thought you were doing where youwere going.
One day it is and the next dayit isn't.
Bella Paige (03:46):
So yeah, hopefully that kind of brings together
some of the ways that Iexperienced concussion and brain
injury, For sure, we definitelytalked about the loss, and the
loss of self I remember youtalking about and identity and
all these things.
It's a huge part of all of it.
And the anger oh no, anybodywho's listening to the podcast
knows I was like key number oneon the anger explosiveness.
Chaandani Khan (04:09):
As we awkwardly laugh about it.
I think you and I did this lasttime.
We had a little like a humormoment where you just kind of
have to at some point rightEventually, yeah.
Bella Paige (04:17):
Eventually.
Yeah, back then I probablywasn't laughing.
I also really wasn't aware ofit before, don't know if it was
just because there was so muchgoing on, but I remember being
angry, but I didn't realize howintensely I was angry towards
pretty much everyone in my life,to my parents, to pretty much
anyone.
I would lash out and everything, and sometimes my partner.
(04:39):
I talk about it and I'm like Iwas a really angry person back
then, right, and he'd be likeuh-huh, and I'm like, yeah,
sorry, so it's definitely.
You know, there's so manyaspects of it and that's a good
way of explaining it.
Like you know, it affected youin so many ways and from things
like that you wouldn't think of,like going for a walk and
things like that that a lot ofpeople don't put together with a
(05:01):
concussion, and they think, oh,you hit your head, but what do
you mean?
you have trouble walking, likethey might get that you have
trouble with like a big you knowgoing running a marathon,
running a 5K or something, butthey're like you're struggling
walking and you're like, yeah,look.
Chaandani Khan (05:16):
I am.
Yeah, it's all those what Irefer to as micro struggles.
It's just micro struggle onmicro struggle and all those
layered up it's reallyoverwhelming.
Bella Paige (05:26):
I had loved the micro struggles.
That was one of my favoritethings you mentioned last time.
Yeah, I was like that is agreat term for all of this.
I've been using it since.
I was like this is great.
Chaandani Khan (05:34):
I was glad to hear that.
That's.
One of my goals, you know, isto actually it's interesting
that my language center andabilities were hit so hard,
because language has always beensomething really important to
me and to my family and I grewup with an excellent command of
the English language and grammarand structure and how to really
bring to life what you want toexpress.
And so you know at this pointwhere I'm at, where I've taken
(05:57):
back a lot of that ability andbuilt back and worked really
hard to build it back.
It's very exciting for me to beable to use that skill set that
I have to create words andconcepts, much like micro
struggles or one of many otherin my own little lexicon that
I'm creating to help not onlysurvivors like you and I
understand our experience, butto help us then explain it to
(06:20):
others so that they canunderstand us or maybe they can
offer us a certain amount ofsupport.
Bella Paige (06:25):
Yeah, that's a huge part is communicating it to
others, even just explaining itto ourselves.
I remember that was a moment.
I went through a lot, even tothis day, with the chronic
illnesses.
Like sometimes I mentioned itto people and I'm like I don't
know how to explain to you.
I just like, yeah, I'm sick, Idon't know.
There's so many little thingsand layers.
(06:47):
I started going to the gymrecently.
Chaandani Khan (06:49):
You celebrate that.
Bella Paige (06:51):
Thanks.
People know about this onConcussion Connect, but I
recently started going to thegym like a big commercial gym,
which I haven't done in a longtime.
So I was going and mygirlfriend was working out and I
was like I don't even know howto explain to you that like I
have pots and she's like, okay,and my other girlfriend's like
I've been learning all about iton TikTok and I'm like, okay,
(07:14):
that's good, but do youunderstand it?
I don't know.
But we were working out andshe's like oh, I'm sick, and I'm
like I'm working out with pots.
Like you already mentioned,we're probably on the same level
right now.
Chaandani Khan (07:27):
Actually, yeah, and it's kind of like sorry, I
have to jump in and what you didthere makes so much sense
because you're able to take whatyou're going through, make it
relatable to someone else who isill and all of a sudden, now
that they're having thatexperience, they can understand
just a little percentage ofyours and I just I had to call
that out because I think that'ssuch a good way to do it.
Bella Paige (07:49):
It's like, do I explain how the blood flow?
I'm like?
I'm just going to say like,yeah, I get it Sometimes, like
the terms are really helpful andlike defining the chronic
illness stuff versus PCS for mehas definitely been a jump on
how to explain it, because it'sa little bit newer to me and I
look even it's even lessinvisible than my other stuff
(08:11):
was, I find, because I reallyI'm doing so much better with it
, Like I look more lively, evenmore than I did before, and so
you've given us a little bit ofa background.
How are you doing now?
How are you doing symptom wisesince we talked?
I know it's been a little while, but how has it been?
Chaandani Khan (08:29):
Yeah, what a great question and this is so
great for me to reflect uponbecause, you know, I think when
anyone just to start off withsaying that when anyone goes
through this kind of experienceI think some of us are taught to
really compare back.
So where am I today versus oneweek ago, versus one year ago,
you know, so on and so forth,and able to kind of gauge where
(08:49):
we're at and make sure thatwe're able to still see that
there is growth and that thereis improvement and forward
momentum?
So this is a really greatquestion Because you and I spoke
, I think we determined it wasabout a year and a half ago, not
two years.
You're not no, not two years,and yeah.
So I have to say that overall,it feels like I have hit further
levels of healing in thistimeframe and I don't want to
(09:13):
misrepresent myself or makeanyone feel that their journey
is misrepresented by justboiling it down to time, but I
will say that time does play abig role, which is something
that took me a couple years toactually accept.
So one piece is time, anotherpiece is pursuing a few more
different types of treatment.
Since you and I spoke, Iactually slowed down on a lot of
(09:34):
my treatments and therapies andsuch that I was doing Couple
reasons One is that I just hit amassive burnout because it's
exhausting.
It is not a vacation, it is nottime off, it is full-time work.
And another is that I had justbeen able to see different
improvements.
So I just kind of wanted totest things out and see if I
live I was going to say normallyis an awful word, but if I live
(09:57):
, kind of how I was before,where am I at?
Things have moved forward as aproduct of time, as a product of
further therapies, and onething that I really want to
share is that for the first timein four and a half years, I
started acupuncture, and that issomething that I've heard
people say quote for years, andI've heard survivors of
concussion, brain injuries speakof and people who are managing
(10:19):
all sorts of other physical,emotional, mental, every kind of
struggle.
I guess out there that there isand I have to tell you that I
am a fan the number one driverthat took me into acupuncture
was just, I feel like for yearsI have tried so many different
strategies to combat this insane, overwhelming, all-consuming
(10:41):
fatigue that I've faced.
That has been something that,from the very beginning of my
injury up until now, it hasreally controlled my life in
every way possible.
Even nowadays, when I plan, Iplan specific drive time in and
then I plan rest time into mydays and I don't stack
activities that I don't feel Ican manage, because I need to
(11:02):
manage the energy that I haveand do it well.
So acupuncture has been a gamechanger for me personally.
I'd also just like to have adisclaimer that I am not a
medical professional.
I am not saying this is the beall, end all, but I'll say that
in my specific body, in myspecific experience, I think
I've been going so far foraround maybe 13, 14 weeks every
(11:23):
single week and I'm finding thatI'm able to push my days for
longer periods of time, which Ihonestly I'm grinning as I say
this because it's such a biglevel unlocked in my experience
and my life and my lifestyle.
That's something that I haven'tfelt for so many years.
I've also been able to I referto it as stacking, because now
(11:43):
everything in my life is soscheduled, but I'm able to stack
different activities as welland continue through, sometimes
without taking a break, and nota detriment to myself, but truly
be able to do it, and I've evennoticed that sometimes in the
evening I'm able to stackdifferent activities.
You know, my experience of thishas been that by that time I'm
really slowing down for the day,but sometimes I'm feeling like
(12:07):
I still have like some naturalenergy sort of residing within
me, and that's huge.
For anyone who, you know, hasseen my, my, my day-to-day, in
my year-to-year, my struggles upclose, this is mind-blowing.
I'm so excited.
I'm not fully there yet foralmost everything, but in this
particular moment I'm referringto how I used to live with an
(12:28):
omitted amount of energy in mylife.
Bella Paige (12:30):
I'm I'm so happy for you.
You have no idea.
This is why I'm really excitedfor this whole series of like
repeat guests.
It's more for me than anyoneelse, because I'm like I love
hearing like how everyone isdoing and it's so great to see
that things are improving.
And you know, it's funny thatyou mentioned the taking a break
, because I actually hadepisodes that came out in
(12:51):
October.
They were just like soloepisodes with me and I was kind
of like telling people to dothis without telling them.
I was like just try.
Like you know, sometimes it'sjust you don't really know how
you're doing unless you're notin therapy and you're not doing
all the things where you'repushing yourself to your limits.
So sometimes you have to take astep back.
(13:12):
And also, a mental break isreally important.
We don't always notice how muchbeing a patient is being
mentally draining.
Even though it is just, youknow, chiropractor, physical
therapy, you're still being apatient.
It's still a lot to think about.
It kind of can cover your brainand your mind.
And I remember Strictly beinglike it's okay to take a break,
almost just giving peoplepermission, because sometimes
(13:34):
you feel like you're failingwhen you do or you feel like
you're giving up.
But you're not giving up itdoesn't mean you can't go back.
It just means maybe you know,set it off, tell your medical
professionals I'll be back infour weeks, mm-hmm, you know.
And if things get worse reallyfast, then go back sooner.
Don't wait.
Always, it's always an option.
(13:55):
But you know that timepiece isreally tricky because so many
people struggle with that, likefor me.
People always ask like whatworked, what made you better?
And I always have to say is Idon't Don't really know all the
answers, but of course time is ahuge component to it.
But you can't just rest, youcan't just do nothing, because
(14:16):
you know it's really hard tofigure out, which is where this
is so complicated.
But I'm glad you love theacupuncture.
Chaandani Khan (14:22):
Mm-hmm.
Bella Paige (14:22):
I did it with a traditional medicine individual
and it was great.
We had a very interestingrelationship.
Because I would get nervous,because they would go in my head
and in my face, me too, in myforehead, in my ears.
And then he'd leave, yes, andyou're like, just lay there and
my partner I haven't, actually,we haven't talked about this in
(14:44):
years but I'm like I would laythere and he texts me don't move
, don't fall asleep, and I'mlike you're not being helpful.
But, like you know, he's justtrying to like ease up my nerves
about it, because I get nervous, because it is relaxing.
They're like I just like whatif I pass out and I roll with
all these little?
Chaandani Khan (15:00):
You know what I have a lot to say on the topic
of needles as well.
Now I just want to clarify thatour point today, dear listeners
, is not to dissuade you fromtrying it.
No, it is good.
It's good very much it's.
Yeah, I also had the same kindof.
I'm a person who has multipletattoos, but that type of needle
is a very different experiencefor me.
(15:22):
Where is something left in yourskin, in your face?
All over your body is different.
But I just want to be, I justwant to touch on that and then
also say to people there arepeople listening who are either
on the fence or perhaps likewith taking that, starting an
acupuncture treatment, orperhaps people who haven't heard
of it before.
Do not write it off.
I, I can't stand even sliverslike anything going into the
(15:43):
skin, and so for me to Again,it's been about 14 weeks and I
just want you to know that everytime, just like bellow is
saying she did you just go andyou Just, you just do it for the
greater good, and this will.
This will actually show, likeyou know, I can speak to myself
here, but my level ofdetermination to work on
something like fatigue, becauseit was just holding my entire
(16:03):
life down and holding me backfrom Everything that I possibly
wanted to be doing and thefreedom I wanted to have.
So the fact that I would gothere and still go there, to
allow needles in my face, in mychest, down my legs, around my
shin bones, in my feet, in myhands and on my back, so that's
a testament to how much Ibelieve in this treatment and
how much I feel the differencein my own body.
(16:23):
I should mostly say so don't be, don't be afraid of trying it.
At least try it, see how itgoes.
I.
Bella Paige (16:29):
Agree, it's really not that bad.
It was just like I did it whenI was younger I think I was like
17, 18 and I just remember andlike and I have no problem with
needles, like IVs.
I have tattoos, but whenthey're left in you it takes a
minute to kind of cycle, but youdon't really feel.
You don't feel them Mm-hmm,it's not like you're like
noticing where every single oneis.
It's definitely a little bitmore complicated than that, but
(16:52):
also usually the people that doit are really good at explaining
, walking you through theprocess.
Chaandani Khan (16:57):
So definitely something to consider trying
also just an idea if people arewanting to try it.
What I have done in thosesessions that I find it's mental
, it you don't really feel them,it's not like a painful
experience, but mentally whatI've done is I specifically take
myself if I'm having a daywhere it's just a really hard
time managing you know, needlesin my face.
I take myself to a reallydifficult time during my
(17:20):
concussion brain injuryexperience.
Genuinely, I take myself there,I let myself feel it for a
minute and just remember aspecific struggle and I ask
myself Is this moment I'm inwith the needles worse?
And generally it is not.
So just to put that out there,this could be translated to all
sorts of treatments that peopleare currently seeking or they're
just trying to get themselvesthrough.
(17:41):
My only recommendation comingoff of that would be just don't
let yourself stay in the reallyhard space, just if you're able
to kind of take a peek at it inmeans of comparing and reminding
yourself that where you are inthe present Isn't all that bad.
Bella Paige (17:54):
Yeah, no, I really love that because I.
So there's this medication.
Because we're on the topic ofneedles, when you go to the
hospital they call it a migrainecocktail.
I didn't really have much luckwith it, but they would give me
it when I go to the emerge andForever.
When I would get it, my wholebody would freak out and I would
like rip the IV out of my armand I would cry and I Would
(18:15):
shake and like I did this likeon and off and like my mom would
be there and I did lots of IVs,no problem with needles.
Every time I got this one I'dfreak out.
But we didn't ever get tolduntil like two years ago.
It took eight years of havingthis medication off because you
know, you tell them it doesn'twork, but they want to try it
anyways before they give yousomething else, and that's just
(18:36):
our medical system.
They give it to you anyways andthey would give it to me and
for the first time ever I had anurse tell me.
By the way, this triggers aflight or fight response in
people.
Oh, but this medication triggersit, and I was like I wish
somebody told me that, yeah, forthe past eight years, because
(18:57):
it really they would have madeall the difference.
Because I already have a fightor flight.
I have an illness that causesthat, where I'm already like I
already live in fight or flightevery day, all day.
It's just like and I have towork on that all day and usually
I can keep it pretty down, butthere's things that'll settle it
up or freaking out.
I guess, knowing that thatwould happen and just letting
(19:20):
myself like breathe through itand being like you know what
this passes, I know it's gonnapass, and so, and just like
distracting my brain and allthat, it was like a hundred
times better.
Of course it was definitelylike you know, you felt that
surge of adrenaline, but justtelling myself you know what,
like we know what this ishappening inside me, and the
same thing with panic attacks,all those types of things, like
(19:42):
you know it'll pass, and justtelling yourself that sometimes
can make a world of a difference.
So I do wanna take a quickbreak before we get into you
know how your concussion isaffecting you more today, what
you're really up to, but we'lltalk about that after the break
we have so many five starreviews coming in for the post
(20:02):
concussion cookbook on Amazon.
This cookbook was something Ihad been looking for.
It pairs nutritionalinformation specific to
concussion recovery with tipsfor symptoms, and the recipes
are delicious.
My husband and teenager lovedit too.
Very grateful to have thisresource.
If you bought the cookbook,make sure to leave a review and
if you haven't, make sure youfind yours on Amazon today.
(20:25):
I'll do the link in our episodedescription.
Welcome back to the postconcussion podcast with myself,
Bella Paige and today's repeatguest, Chaandani Khan.
So do you wanna kinda tell ushow your concussion affects you
still?
I know it's kinda hard to talkabout, but how does it still
affect you day to day, you know?
Just so I think the best thingabout this is people can see
(20:47):
progress, but also that you knowprogress doesn't always mean
that everything goes away either.
Yeah, it's still important.
Chaandani Khan (20:53):
I'm so glad that you're approaching it this way
because I think it is reallyeasy to hear when someone starts
to have some successes, whetherthey're small or large, it's
really easy to kind of want topaint that with a brush and be
like everything is fine.
You know, and as much as youknow, what you're seeing in me
is the level of celebration Ihave for this success in my life
, which I think is reallyimportant to celebrate and to be
(21:15):
happy and to be in that momentand to really just like dive
into that level of gratitudethat it opens up, but also to be
realistic and say you know,like I can have both.
I can have so much gratitudeand so much excitement for a
success, but I can also bereally struggling with some
pieces and frustrated.
And you know, I think theoverall goal, at least for
myself, is to continue trying tomake you know the successes
(21:38):
like a I'm holding my hands at,like a scale, make it the better
side of a scale and thestruggles the lesser side of it.
That being said, some thingsthat I am still working through
I mean really honestly, fatigueis still a part of my life.
I am finding that it isadjusting, as I was mentioning
and celebrating, but that is apiece that I still do very
aggressively plan my days and myweeks and my months around.
(22:01):
So anything or everything thatI either want to do for myself,
like going for a walk orsomething like you know,
agreeing to help a friend withsomething important to them
everything is based upon myenergy and me planning it.
So that is still a really bigpiece.
Also, this is interesting thatwe are talking about this
because I'm in a space now atthis point in my journey where
(22:25):
I'm, you know, I was just insurvival mode for so long and I
was troubleshooting the mostessential issues for me to have
my day-to-day life back in a way, or back on track in some
semblance of that.
So I there were a bunch of otherissues that at that time were
very much not the hill I wasgoing to die on, so to say.
(22:45):
So I'm in this Period of timenow where I can start looking at
those and it's actually reallya good thing.
The fact that I'm able to lookat Very long lasting and
annoying symptoms that I justwere not in the survival
category is positive to me.
It sounds a little bit weird,maybe a little counterintuitive,
but it's incredible because itshows that I have been moving
(23:07):
forward and moving through andimproving in different ways to
get here.
So, as an example, I'mcurrently waiting to see a neuro
optometrist Because this isjust a very weird thing, but,
since my injury, any time I seethe color red on screens, it's
3d to my eyes.
So we're talking on my phonescreen, on a computer screen, on
(23:28):
a large TV screen, any screen,and so that's something that, as
you can see, it wasn't having amassive impact on my overall
quality of life or ability toFeed myself, for example, but it
is very annoying and it's notnormal.
So that's something thatfinally, I'm in a space where
I'm like okay, I'm a little bitstressed, just to be very
transparent, because it triggersa bit of years that I spent
(23:50):
going to new providers and goingto new doctors and
troubleshooting pieces.
So a little bit of that is inmy mind, but I'm trying to stay
focused on the fact that I getto chase this down now and I get
to find out what's going on,because I'm in a better space
overall.
Bella Paige (24:06):
Well, I think you explained that really well, and
I'm sorry to hear about the redthing that's.
The other thing, though, aboutall this is sometimes you have
to do it in stages.
You know, like you can't focuson everything at once.
It's not that you can't take awhole body approach, because
that's really important, butsometimes it's like you have so
many things going on.
Like for me, it was theheadaches.
They were my biggest thing,they were all I cared about.
(24:29):
It was the only thing I wantedgone.
Like at the time, like thefatigue Was awful, but the pain
was the worst thing ever andthat was what I had to deal with
the most.
And you know, with the fatigueit is something that comes and
goes.
Like for me, I have somethingcalled chronic fatigue syndrome,
so I'll do really good for awhile, but then this morning I
got up to let the dogs out andthen I leave back down and then
(24:51):
I try to wake up and like almostlike overly consuming.
I'm sure you know the feelingwhere, like you can't even open
your eyes enough to look at aphone and Check a message and
see who messaged you or get adrink of water.
Like you just can't get up.
And so you know I had thatfeeling and you know sometimes
I'll fight it and I'll get upand then I'll take a nap in like
(25:11):
an hour or two.
But today I was like you know, Idon't have a lot going on this
morning, I'll just stay in bedfor a little longer until I can
get up.
And then, you know, and I hadluckily had the ability to do
that so I rested a little longerand then I got up, and it's
just one of those things thatyou know, things have progressed
so much, but there's alwayssometimes there'll be nothing.
(25:33):
I love when people actuallyhave like I don't think I have
any symptoms.
That's amazing.
But you know, reality is a lotof us still do, even if they do
seem a lot more minor comparedto what they were before.
Chaandani Khan (25:45):
Yeah, that was really really well explained,
and I mean, what I just reallylove about the way that you show
up and the way that you serveyour audience is that you are
also very transparent aboutwhere you're at and your
struggles.
Yeah, I just I reallyappreciate that, and I know for
a fact that your listeners do aswell, because you are also
exemplifying a concept that Ijust mentioned, which is that
(26:05):
you can be both.
You can be struggling and youcan be doing your best just to
open your eyes and look at atext, but you can also be taking
over the world and justspreading spreading the good
word about incuscial braininjury and treatments and
survivors, and so I just wantedto acknowledge that, that I
think you do that really well.
Bella Paige (26:23):
Thanks.
And so we've talked about yourstruggles and all that.
So what are you up to today?
You know what's going on inyour life.
Chaandani Khan (26:31):
Yeah, so today I find myself well, as I
mentioned, kind oftroubleshooting some outlier
pieces.
I also just want to say thatthose two things I shared the
fatigue and the 3d red color tomy eyes those are not.
That is not an exhaustive list.
There are still other piecesthat every single day, that that
I do face and that I do applystrategies to to be able to move
(26:54):
through my day with grace orperhaps just to get to the end
of my day.
So I just wanted to put thatout there.
I am in a space now where I'mvery excited to say that I am
thinking about part time work,which is for the first time in,
yeah, four and a half years.
So that is extremely excitingto me, and so it's kind of two
things.
That is one part, and the otherpart is I also can start
(27:18):
helping people directly becauseI have been dreaming up ideas
and concepts and, yeah, I'm justin a space where I can start to
actually take those pieces onand start to actually just
action plans that I have formyself.
So I'm keeping it a little bitvague right now, but I will just
say that returning to work parttime with an organization that
(27:39):
supports concussion, braininjury, is very exciting, and
more details as things evolve inthat direction.
That's definitely what I havemy eyes on and my mindset on as
well as, yeah, starting startingup my own way of serving our
community Very exciting.
I do not know how I'm going todo both.
I don't have a lot of answers.
You know I'll be the first oneto say that this entire time, I,
(28:03):
as well as probably a lot ofpeople in this situation, are
living under a very heavyblanket of uncertainty, and it's
so for me.
When I take a look objectivelyand look at my entire journey
thus far, I always say that it'sdifferent periods of
uncertainty, there's differentcritical pieces, there's
different level of struggle,there's different level of need,
(28:23):
and so the one that I'm inright now is very much like okay
, great, I'm in this space, I'mgoing to return, I'm going to
start working again, I'm goingto make money, I'm going to help
people, but how, I don't know,and I just I feel like I'm
staying so connected to my ownpersonal why and, most
importantly, to a need that isgreater than myself and the rest
(28:47):
of it, all the pieces, the howit will just fall in place.
I know enough now to say that Iprobably will stumble and I
probably will fall a bit alongthe way, but that's okay.
I've done kind of personaldevelopment work at this point
and I've worked reallyintentionally on the mindset
that I've built and the level ofgrit and strength and I'm
(29:08):
actually okay with any of thathappening.
Bella Paige (29:10):
Yeah, and that's actually something that's really
big about this.
Just the other day in supportgroup we had a new member join
and they said that you knowthey're doing really good now,
other than you know, of coursethey still have struggles, but
what they want to do now is helppeople and I think that's a
wonderful thing for anyone to do.
And whatever way that looks,you know, for some people it
(29:31):
means something big.
Sometimes it's just somethingsmall, like we have our support
group member who's been flooding, concussion connect with advice
, which is wonderful, and thingslike that.
So you know, in whatever way itlooks and there will be,
believe me, I get it there'sbeen things with this that have
worked out great and there'sbeen other things where I'm like
, oh, that didn't really workout, we'll do something
(29:52):
different.
That's sometimes just the wayit goes.
Like the interactive symptomlist is something that I talked
about months ago and I don'tlike it.
So it's not out there yet.
Like it'll be out and I keepstaring at it and I'm like it
needs something else.
I don't know what it needs.
It will make it out there, but,like the last, like few months,
every time I look at it I'mlike I don't know what it needs
(30:14):
yet, but you know it will getthere eventually.
Chaandani Khan (30:16):
So it's good You're listening to your gut and
that also speaks to yourdedication to provide the best
possible value, because you knowit's not there, so it's not
worth just flinging out into theuniverse.
It's helpful.
Bella Paige (30:27):
And like it.
Just it's not there yet.
I will figure it out what itneeds.
So I am so grateful that you'vecome back on and taken the time
out of your day to share howyou're doing again a year and a
half later, which is just crazyto me but so wonderful at the
same time.
So you've shared so much todayand I'm so grateful that you've
come back on as a repeat guest.
(30:47):
And to me it's crazy that itwas so long ago that you were on
here sometimes for somethingabout podcasting.
It just feels like yesterday,like for me, all these people
that I've met, it just it feelslike I've talked to everyone so
recently, but it's actually beenso long, and so I'm so grateful
that you've come on.
And so.
Is there anything else youwould like to add before we end
today's episode?
Chaandani Khan (31:08):
There is.
Thank you for asking.
One note actually just came tomind right now when you said
that is that the last time youand I spoke was a year and a
half ago, and this is just kindof a reminder to everyone
listening that a lot can happenin a year and a half.
A lot can happen in six months,in two weeks.
So just kind of a reminder toeveryone that even if you're in
(31:29):
a space where it feels likenothing is moving forward,
you're feeling lost, you don'thave a path forward, you don't
have answers, you're living injust a suffocating cloud of
uncertainty.
No, but as a product of time,things will move forward, and
that's not originally what Ithought I would share as our
closing note, but you know whatI have to go with my gut, and
(31:51):
that struck me, and so I hopethat that reminder really speaks
to somebody out there who needsto hear that message, and I'm
sending them a virtual hug aswell.
Bella Paige (32:00):
Yeah well, thank you so much for coming on.
Thank you a lot Need more thanjust this podcast.
Be sure to check out ourwebsite postconcussioninc.
com to see how we can help youin your post concussion life.
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 foryears, it was time to do
something about it.
So welcome to thePost-Concussion Podcast, where
we dig deep into life when itdoesn't go back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:26):
The Post-Concussion Podcast isstrictly an information podcast
about concussions andpost-concussion 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.
(00:47):
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 episode number 128 ofthe Post-Concussion Podcast
(01:07):
with myself, Bella Paige andtoday's repeat guest, Chaandani
Khan.
We have another repeat guestthis week.
If you want to listen to herprevious episode, you have to
scroll or search for episodenumber 669, an incredible
episode on living in the grayspace and micro struggles.
Years ago from now, Chaandaniexperienced a concussion which
(01:29):
significantly changed her life.
She spent her time learningdifferent ways to heal and today
she is back to share how she'sbeen doing.
Welcome back, Chaandani, Thankyou.
So, to start, you have been aguest on the show before, but I
kind of want to get back intojust so anybody who hasn't heard
your past episode.
It is episode 69, while I will,of course, have given more
(01:51):
details of that before, just onyour concussion experience in
general, just a small backgroundon it of what you want to share
.
Chaandani Khan (01:58):
Sure, so I'm really excited to be back and
talking with you again.
So, again, thank you for that.
A little bit about theconcussion experience that I've
had and that I'm still workingthrough.
I was in a car accident in 2019, and so that is coming up to
about four and a half years ago,as of next month end of year, I
should say and it affected mein multiple ways, and so it
(02:22):
affected me cognitively,physically, emotionally as well
as behaviorally and so differenttypes of effects.
Just to kind of bring that tolife, I'd like to give a couple
of examples.
Cognitively, something I reallystruggled with was language
comprehension, as well as myfocus and attention.
There were lots of other piecesthere, but this is just to kind
(02:43):
of help people understand thesedifferent types or the different
ways that symptoms can show upin your life.
Physically, I had extreme dailyfatigue, which is something
that up until very recently, Iwas still swimming through very
murky waters up, as well, as Ihad heart rate variability
issues that really came intoplay when I was trying to be
(03:04):
physically active or even justwalk up small hills in the
sidewalk.
Emotionally, I experiencedanxiety, depression, PTSD, and
at that time, those were veryforeign concepts to me, as I
hadn't been in a situation ofthat level of struggle and pain,
I'd say, and emotionally I hada lot of anger and a lot of
(03:27):
sadness.
And one of the most challengingthings for me which I'm sure I
spoke to a bit last time atleast, was the concept of loss
and just losing everything thatyou thought you were, that you
thought you were doing where youwere going.
One day it is and the next dayit isn't.
Bella Paige (03:46):
So yeah, hopefully that kind of brings together
some of the ways that Iexperienced concussion and brain
injury, For sure, we definitelytalked about the loss, and the
loss of self I remember youtalking about and identity and
all these things.
It's a huge part of all of it.
And the anger oh no, anybodywho's listening to the podcast
knows I was like key number oneon the anger explosiveness.
Chaandani Khan (04:09):
As we awkwardly laugh about it.
I think you and I did this lasttime.
We had a little like a humormoment where you just kind of
have to at some point rightEventually, yeah.
Bella Paige (04:17):
Eventually.
Yeah, back then I probablywasn't laughing.
I also really wasn't aware ofit before, don't know if it was
just because there was so muchgoing on, but I remember being
angry, but I didn't realize howintensely I was angry towards
pretty much everyone in my life,to my parents, to pretty much
anyone.
I would lash out and everything, and sometimes my partner.
(04:39):
I talk about it and I'm like Iwas a really angry person back
then, right, and he'd be likeuh-huh, and I'm like, yeah,
sorry, so it's definitely.
You know, there's so manyaspects of it and that's a good
way of explaining it.
Like you know, it affected youin so many ways and from things
like that you wouldn't think of,like going for a walk and
things like that that a lot ofpeople don't put together with a
(05:01):
concussion, and they think, oh,you hit your head, but what do
you mean?
you have trouble walking, likethey might get that you have
trouble with like a big you knowgoing running a marathon,
running a 5K or something, butthey're like you're struggling
walking and you're like, yeah,look.
Chaandani Khan (05:16):
I am.
Yeah, it's all those what Irefer to as micro struggles.
It's just micro struggle onmicro struggle and all those
layered up it's reallyoverwhelming.
Bella Paige (05:26):
I had loved the micro struggles.
That was one of my favoritethings you mentioned last time.
Yeah, I was like that is agreat term for all of this.
I've been using it since.
I was like this is great.
Chaandani Khan (05:34):
I was glad to hear that.
That's.
One of my goals, you know, isto actually it's interesting
that my language center andabilities were hit so hard,
because language has always beensomething really important to
me and to my family and I grewup with an excellent command of
the English language and grammarand structure and how to really
bring to life what you want toexpress.
And so you know at this pointwhere I'm at, where I've taken
(05:57):
back a lot of that ability andbuilt back and worked really
hard to build it back.
It's very exciting for me to beable to use that skill set that
I have to create words andconcepts, much like micro
struggles or one of many otherin my own little lexicon that
I'm creating to help not onlysurvivors like you and I
understand our experience, butto help us then explain it to
(06:20):
others so that they canunderstand us or maybe they can
offer us a certain amount ofsupport.
Bella Paige (06:25):
Yeah, that's a huge part is communicating it to
others, even just explaining itto ourselves.
I remember that was a moment.
I went through a lot, even tothis day, with the chronic
illnesses.
Like sometimes I mentioned itto people and I'm like I don't
know how to explain to you.
I just like, yeah, I'm sick, Idon't know.
There's so many little thingsand layers.
(06:47):
I started going to the gymrecently.
Chaandani Khan (06:49):
You celebrate that.
Bella Paige (06:51):
Thanks.
People know about this onConcussion Connect, but I
recently started going to thegym like a big commercial gym,
which I haven't done in a longtime.
So I was going and mygirlfriend was working out and I
was like I don't even know howto explain to you that like I
have pots and she's like, okay,and my other girlfriend's like
I've been learning all about iton TikTok and I'm like, okay,
(07:14):
that's good, but do youunderstand it?
I don't know.
But we were working out andshe's like oh, I'm sick, and I'm
like I'm working out with pots.
Like you already mentioned,we're probably on the same level
right now.
Chaandani Khan (07:27):
Actually, yeah, and it's kind of like sorry, I
have to jump in and what you didthere makes so much sense
because you're able to take whatyou're going through, make it
relatable to someone else who isill and all of a sudden, now
that they're having thatexperience, they can understand
just a little percentage ofyours and I just I had to call
that out because I think that'ssuch a good way to do it.
Bella Paige (07:49):
It's like, do I explain how the blood flow?
I'm like?
I'm just going to say like,yeah, I get it Sometimes, like
the terms are really helpful andlike defining the chronic
illness stuff versus PCS for mehas definitely been a jump on
how to explain it, because it'sa little bit newer to me and I
look even it's even lessinvisible than my other stuff
(08:11):
was, I find, because I reallyI'm doing so much better with it
, Like I look more lively, evenmore than I did before, and so
you've given us a little bit ofa background.
How are you doing now?
How are you doing symptom wisesince we talked?
I know it's been a little while, but how has it been?
Chaandani Khan (08:29):
Yeah, what a great question and this is so
great for me to reflect uponbecause, you know, I think when
anyone just to start off withsaying that when anyone goes
through this kind of experienceI think some of us are taught to
really compare back.
So where am I today versus oneweek ago, versus one year ago,
you know, so on and so forth,and able to kind of gauge where
(08:49):
we're at and make sure thatwe're able to still see that
there is growth and that thereis improvement and forward
momentum?
So this is a really greatquestion Because you and I spoke
, I think we determined it wasabout a year and a half ago, not
two years.
You're not no, not two years,and yeah.
So I have to say that overall,it feels like I have hit further
levels of healing in thistimeframe and I don't want to
(09:13):
misrepresent myself or makeanyone feel that their journey
is misrepresented by justboiling it down to time, but I
will say that time does play abig role, which is something
that took me a couple years toactually accept.
So one piece is time, anotherpiece is pursuing a few more
different types of treatment.
Since you and I spoke, Iactually slowed down on a lot of
(09:34):
my treatments and therapies andsuch that I was doing Couple
reasons One is that I just hit amassive burnout because it's
exhausting.
It is not a vacation, it is nottime off, it is full-time work.
And another is that I had justbeen able to see different
improvements.
So I just kind of wanted totest things out and see if I
live I was going to say normallyis an awful word, but if I live
(09:57):
, kind of how I was before,where am I at?
Things have moved forward as aproduct of time, as a product of
further therapies, and onething that I really want to
share is that for the first timein four and a half years, I
started acupuncture, and that issomething that I've heard
people say quote for years, andI've heard survivors of
concussion, brain injuries speakof and people who are managing
(10:19):
all sorts of other physical,emotional, mental, every kind of
struggle.
I guess out there that there isand I have to tell you that I
am a fan the number one driverthat took me into acupuncture
was just, I feel like for yearsI have tried so many different
strategies to combat this insane, overwhelming, all-consuming
(10:41):
fatigue that I've faced.
That has been something that,from the very beginning of my
injury up until now, it hasreally controlled my life in
every way possible.
Even nowadays, when I plan, Iplan specific drive time in and
then I plan rest time into mydays and I don't stack
activities that I don't feel Ican manage, because I need to
(11:02):
manage the energy that I haveand do it well.
So acupuncture has been a gamechanger for me personally.
I'd also just like to have adisclaimer that I am not a
medical professional.
I am not saying this is the beall, end all, but I'll say that
in my specific body, in myspecific experience, I think
I've been going so far foraround maybe 13, 14 weeks every
(11:23):
single week and I'm finding thatI'm able to push my days for
longer periods of time, which Ihonestly I'm grinning as I say
this because it's such a biglevel unlocked in my experience
and my life and my lifestyle.
That's something that I haven'tfelt for so many years.
I've also been able to I referto it as stacking, because now
(11:43):
everything in my life is soscheduled, but I'm able to stack
different activities as welland continue through, sometimes
without taking a break, and nota detriment to myself, but truly
be able to do it, and I've evennoticed that sometimes in the
evening I'm able to stackdifferent activities.
You know, my experience of thishas been that by that time I'm
really slowing down for the day,but sometimes I'm feeling like
(12:07):
I still have like some naturalenergy sort of residing within
me, and that's huge.
For anyone who, you know, hasseen my, my, my day-to-day, in
my year-to-year, my struggles upclose, this is mind-blowing.
I'm so excited.
I'm not fully there yet foralmost everything, but in this
particular moment I'm referringto how I used to live with an
(12:28):
omitted amount of energy in mylife.
Bella Paige (12:30):
I'm I'm so happy for you.
You have no idea.
This is why I'm really excitedfor this whole series of like
repeat guests.
It's more for me than anyoneelse, because I'm like I love
hearing like how everyone isdoing and it's so great to see
that things are improving.
And you know, it's funny thatyou mentioned the taking a break
, because I actually hadepisodes that came out in
(12:51):
October.
They were just like soloepisodes with me and I was kind
of like telling people to dothis without telling them.
I was like just try.
Like you know, sometimes it'sjust you don't really know how
you're doing unless you're notin therapy and you're not doing
all the things where you'repushing yourself to your limits.
So sometimes you have to take astep back.
(13:12):
And also, a mental break isreally important.
We don't always notice how muchbeing a patient is being
mentally draining.
Even though it is just, youknow, chiropractor, physical
therapy, you're still being apatient.
It's still a lot to think about.
It kind of can cover your brainand your mind.
And I remember Strictly beinglike it's okay to take a break,
almost just giving peoplepermission, because sometimes
(13:34):
you feel like you're failingwhen you do or you feel like
you're giving up.
But you're not giving up itdoesn't mean you can't go back.
It just means maybe you know,set it off, tell your medical
professionals I'll be back infour weeks, mm-hmm, you know.
And if things get worse reallyfast, then go back sooner.
Don't wait.
Always, it's always an option.
(13:55):
But you know that timepiece isreally tricky because so many
people struggle with that, likefor me.
People always ask like whatworked, what made you better?
And I always have to say is Idon't Don't really know all the
answers, but of course time is ahuge component to it.
But you can't just rest, youcan't just do nothing, because
(14:16):
you know it's really hard tofigure out, which is where this
is so complicated.
But I'm glad you love theacupuncture.
Chaandani Khan (14:22):
Mm-hmm.
Bella Paige (14:22):
I did it with a traditional medicine individual
and it was great.
We had a very interestingrelationship.
Because I would get nervous,because they would go in my head
and in my face, me too, in myforehead, in my ears.
And then he'd leave, yes, andyou're like, just lay there and
my partner I haven't, actually,we haven't talked about this in
(14:44):
years but I'm like I would laythere and he texts me don't move
, don't fall asleep, and I'mlike you're not being helpful.
But, like you know, he's justtrying to like ease up my nerves
about it, because I get nervous, because it is relaxing.
They're like I just like whatif I pass out and I roll with
all these little?
Chaandani Khan (15:00):
You know what I have a lot to say on the topic
of needles as well.
Now I just want to clarify thatour point today, dear listeners
, is not to dissuade you fromtrying it.
No, it is good.
It's good very much it's.
Yeah, I also had the same kindof.
I'm a person who has multipletattoos, but that type of needle
is a very different experiencefor me.
(15:22):
Where is something left in yourskin, in your face?
All over your body is different.
But I just want to be, I justwant to touch on that and then
also say to people there arepeople listening who are either
on the fence or perhaps likewith taking that, starting an
acupuncture treatment, orperhaps people who haven't heard
of it before.
Do not write it off.
I, I can't stand even sliverslike anything going into the
(15:43):
skin, and so for me to Again,it's been about 14 weeks and I
just want you to know that everytime, just like bellow is
saying she did you just go andyou Just, you just do it for the
greater good, and this will.
This will actually show, likeyou know, I can speak to myself
here, but my level ofdetermination to work on
something like fatigue, becauseit was just holding my entire
(16:03):
life down and holding me backfrom Everything that I possibly
wanted to be doing and thefreedom I wanted to have.
So the fact that I would gothere and still go there, to
allow needles in my face, in mychest, down my legs, around my
shin bones, in my feet, in myhands and on my back, so that's
a testament to how much Ibelieve in this treatment and
how much I feel the differencein my own body.
(16:23):
I should mostly say so don't be, don't be afraid of trying it.
At least try it, see how itgoes.
I.
Bella Paige (16:29):
Agree, it's really not that bad.
It was just like I did it whenI was younger I think I was like
17, 18 and I just remember andlike and I have no problem with
needles, like IVs.
I have tattoos, but whenthey're left in you it takes a
minute to kind of cycle, but youdon't really feel.
You don't feel them Mm-hmm,it's not like you're like
noticing where every single oneis.
It's definitely a little bitmore complicated than that, but
(16:52):
also usually the people that doit are really good at explaining
, walking you through theprocess.
Chaandani Khan (16:57):
So definitely something to consider trying
also just an idea if people arewanting to try it.
What I have done in thosesessions that I find it's mental
, it you don't really feel them,it's not like a painful
experience, but mentally whatI've done is I specifically take
myself if I'm having a daywhere it's just a really hard
time managing you know, needlesin my face.
I take myself to a reallydifficult time during my
(17:20):
concussion brain injuryexperience.
Genuinely, I take myself there,I let myself feel it for a
minute and just remember aspecific struggle and I ask
myself Is this moment I'm inwith the needles worse?
And generally it is not.
So just to put that out there,this could be translated to all
sorts of treatments that peopleare currently seeking or they're
just trying to get themselvesthrough.
(17:41):
My only recommendation comingoff of that would be just don't
let yourself stay in the reallyhard space, just if you're able
to kind of take a peek at it inmeans of comparing and reminding
yourself that where you are inthe present Isn't all that bad.
Bella Paige (17:54):
Yeah, no, I really love that because I.
So there's this medication.
Because we're on the topic ofneedles, when you go to the
hospital they call it a migrainecocktail.
I didn't really have much luckwith it, but they would give me
it when I go to the emerge andForever.
When I would get it, my wholebody would freak out and I would
like rip the IV out of my armand I would cry and I Would
(18:15):
shake and like I did this likeon and off and like my mom would
be there and I did lots of IVs,no problem with needles.
Every time I got this one I'dfreak out.
But we didn't ever get tolduntil like two years ago.
It took eight years of havingthis medication off because you
know, you tell them it doesn'twork, but they want to try it
anyways before they give yousomething else, and that's just
(18:36):
our medical system.
They give it to you anyways andthey would give it to me and
for the first time ever I had anurse tell me.
By the way, this triggers aflight or fight response in
people.
Oh, but this medication triggersit, and I was like I wish
somebody told me that, yeah, forthe past eight years, because
(18:57):
it really they would have madeall the difference.
Because I already have a fightor flight.
I have an illness that causesthat, where I'm already like I
already live in fight or flightevery day, all day.
It's just like and I have towork on that all day and usually
I can keep it pretty down, butthere's things that'll settle it
up or freaking out.
I guess, knowing that thatwould happen and just letting
(19:20):
myself like breathe through itand being like you know what
this passes, I know it's gonnapass, and so, and just like
distracting my brain and allthat, it was like a hundred
times better.
Of course it was definitelylike you know, you felt that
surge of adrenaline, but justtelling myself you know what,
like we know what this ishappening inside me, and the
same thing with panic attacks,all those types of things, like
(19:42):
you know it'll pass, and justtelling yourself that sometimes
can make a world of a difference.
So I do wanna take a quickbreak before we get into you
know how your concussion isaffecting you more today, what
you're really up to, but we'lltalk about that after the break
we have so many five starreviews coming in for the post
(20:02):
concussion cookbook on Amazon.
This cookbook was something Ihad been looking for.
It pairs nutritionalinformation specific to
concussion recovery with tipsfor symptoms, and the recipes
are delicious.
My husband and teenager lovedit too.
Very grateful to have thisresource.
If you bought the cookbook,make sure to leave a review and
if you haven't, make sure youfind yours on Amazon today.
(20:25):
I'll do the link in our episodedescription.
Welcome back to the postconcussion podcast with myself,
Bella Paige and today's repeatguest, Chaandani Khan.
So do you wanna kinda tell ushow your concussion affects you
still?
I know it's kinda hard to talkabout, but how does it still
affect you day to day, you know?
Just so I think the best thingabout this is people can see
(20:47):
progress, but also that you knowprogress doesn't always mean
that everything goes away either.
Yeah, it's still important.
Chaandani Khan (20:53):
I'm so glad that you're approaching it this way
because I think it is reallyeasy to hear when someone starts
to have some successes, whetherthey're small or large, it's
really easy to kind of want topaint that with a brush and be
like everything is fine.
You know, and as much as youknow, what you're seeing in me
is the level of celebration Ihave for this success in my life
, which I think is reallyimportant to celebrate and to be
(21:15):
happy and to be in that momentand to really just like dive
into that level of gratitudethat it opens up, but also to be
realistic and say you know,like I can have both.
I can have so much gratitudeand so much excitement for a
success, but I can also bereally struggling with some
pieces and frustrated.
And you know, I think theoverall goal, at least for
myself, is to continue trying tomake you know the successes
(21:38):
like a I'm holding my hands at,like a scale, make it the better
side of a scale and thestruggles the lesser side of it.
That being said, some thingsthat I am still working through
I mean really honestly, fatigueis still a part of my life.
I am finding that it isadjusting, as I was mentioning
and celebrating, but that is apiece that I still do very
aggressively plan my days and myweeks and my months around.
(22:01):
So anything or everything thatI either want to do for myself,
like going for a walk orsomething like you know,
agreeing to help a friend withsomething important to them
everything is based upon myenergy and me planning it.
So that is still a really bigpiece.
Also, this is interesting thatwe are talking about this
because I'm in a space now atthis point in my journey where
(22:25):
I'm, you know, I was just insurvival mode for so long and I
was troubleshooting the mostessential issues for me to have
my day-to-day life back in a way, or back on track in some
semblance of that.
So I there were a bunch of otherissues that at that time were
very much not the hill I wasgoing to die on, so to say.
(22:45):
So I'm in this Period of timenow where I can start looking at
those and it's actually reallya good thing.
The fact that I'm able to lookat Very long lasting and
annoying symptoms that I justwere not in the survival
category is positive to me.
It sounds a little bit weird,maybe a little counterintuitive,
but it's incredible because itshows that I have been moving
(23:07):
forward and moving through andimproving in different ways to
get here.
So, as an example, I'mcurrently waiting to see a neuro
optometrist Because this isjust a very weird thing, but,
since my injury, any time I seethe color red on screens, it's
3d to my eyes.
So we're talking on my phonescreen, on a computer screen, on
(23:28):
a large TV screen, any screen,and so that's something that, as
you can see, it wasn't having amassive impact on my overall
quality of life or ability toFeed myself, for example, but it
is very annoying and it's notnormal.
So that's something thatfinally, I'm in a space where
I'm like okay, I'm a little bitstressed, just to be very
transparent, because it triggersa bit of years that I spent
(23:50):
going to new providers and goingto new doctors and
troubleshooting pieces.
So a little bit of that is inmy mind, but I'm trying to stay
focused on the fact that I getto chase this down now and I get
to find out what's going on,because I'm in a better space
overall.
Bella Paige (24:06):
Well, I think you explained that really well, and
I'm sorry to hear about the redthing that's.
The other thing, though, aboutall this is sometimes you have
to do it in stages.
You know, like you can't focuson everything at once.
It's not that you can't take awhole body approach, because
that's really important, butsometimes it's like you have so
many things going on.
Like for me, it was theheadaches.
They were my biggest thing,they were all I cared about.
(24:29):
It was the only thing I wantedgone.
Like at the time, like thefatigue Was awful, but the pain
was the worst thing ever andthat was what I had to deal with
the most.
And you know, with the fatigueit is something that comes and
goes.
Like for me, I have somethingcalled chronic fatigue syndrome,
so I'll do really good for awhile, but then this morning I
got up to let the dogs out andthen I leave back down and then
(24:51):
I try to wake up and like almostlike overly consuming.
I'm sure you know the feelingwhere, like you can't even open
your eyes enough to look at aphone and Check a message and
see who messaged you or get adrink of water.
Like you just can't get up.
And so you know I had thatfeeling and you know sometimes
I'll fight it and I'll get upand then I'll take a nap in like
(25:11):
an hour or two.
But today I was like you know, Idon't have a lot going on this
morning, I'll just stay in bedfor a little longer until I can
get up.
And then, you know, and I hadluckily had the ability to do
that so I rested a little longerand then I got up, and it's
just one of those things thatyou know, things have progressed
so much, but there's alwayssometimes there'll be nothing.
(25:33):
I love when people actuallyhave like I don't think I have
any symptoms.
That's amazing.
But you know, reality is a lotof us still do, even if they do
seem a lot more minor comparedto what they were before.
Chaandani Khan (25:45):
Yeah, that was really really well explained,
and I mean, what I just reallylove about the way that you show
up and the way that you serveyour audience is that you are
also very transparent aboutwhere you're at and your
struggles.
Yeah, I just I reallyappreciate that, and I know for
a fact that your listeners do aswell, because you are also
exemplifying a concept that Ijust mentioned, which is that
(26:05):
you can be both.
You can be struggling and youcan be doing your best just to
open your eyes and look at atext, but you can also be taking
over the world and justspreading spreading the good
word about incuscial braininjury and treatments and
survivors, and so I just wantedto acknowledge that, that I
think you do that really well.
Bella Paige (26:23):
Thanks.
And so we've talked about yourstruggles and all that.
So what are you up to today?
You know what's going on inyour life.
Chaandani Khan (26:31):
Yeah, so today I find myself well, as I
mentioned, kind oftroubleshooting some outlier
pieces.
I also just want to say thatthose two things I shared the
fatigue and the 3d red color tomy eyes those are not.
That is not an exhaustive list.
There are still other piecesthat every single day, that that
I do face and that I do applystrategies to to be able to move
(26:54):
through my day with grace orperhaps just to get to the end
of my day.
So I just wanted to put thatout there.
I am in a space now where I'mvery excited to say that I am
thinking about part time work,which is for the first time in,
yeah, four and a half years.
So that is extremely excitingto me, and so it's kind of two
things.
That is one part, and the otherpart is I also can start
(27:18):
helping people directly becauseI have been dreaming up ideas
and concepts and, yeah, I'm justin a space where I can start to
actually take those pieces onand start to actually just
action plans that I have formyself.
So I'm keeping it a little bitvague right now, but I will just
say that returning to work parttime with an organization that
(27:39):
supports concussion, braininjury, is very exciting, and
more details as things evolve inthat direction.
That's definitely what I havemy eyes on and my mindset on as
well as, yeah, starting startingup my own way of serving our
community Very exciting.
I do not know how I'm going todo both.
I don't have a lot of answers.
You know I'll be the first oneto say that this entire time, I,
(28:03):
as well as probably a lot ofpeople in this situation, are
living under a very heavyblanket of uncertainty, and it's
so for me.
When I take a look objectivelyand look at my entire journey
thus far, I always say that it'sdifferent periods of
uncertainty, there's differentcritical pieces, there's
different level of struggle,there's different level of need,
(28:23):
and so the one that I'm inright now is very much like okay
, great, I'm in this space, I'mgoing to return, I'm going to
start working again, I'm goingto make money, I'm going to help
people, but how, I don't know,and I just I feel like I'm
staying so connected to my ownpersonal why and, most
importantly, to a need that isgreater than myself and the rest
(28:47):
of it, all the pieces, the howit will just fall in place.
I know enough now to say that Iprobably will stumble and I
probably will fall a bit alongthe way, but that's okay.
I've done kind of personaldevelopment work at this point
and I've worked reallyintentionally on the mindset
that I've built and the level ofgrit and strength and I'm
(29:08):
actually okay with any of thathappening.
Bella Paige (29:10):
Yeah, and that's actually something that's really
big about this.
Just the other day in supportgroup we had a new member join
and they said that you knowthey're doing really good now,
other than you know, of coursethey still have struggles, but
what they want to do now is helppeople and I think that's a
wonderful thing for anyone to do.
And whatever way that looks,you know, for some people it
(29:31):
means something big.
Sometimes it's just somethingsmall, like we have our support
group member who's been flooding, concussion connect with advice
, which is wonderful, and thingslike that.
So you know, in whatever way itlooks and there will be,
believe me, I get it there'sbeen things with this that have
worked out great and there'sbeen other things where I'm like
, oh, that didn't really workout, we'll do something
(29:52):
different.
That's sometimes just the wayit goes.
Like the interactive symptomlist is something that I talked
about months ago and I don'tlike it.
So it's not out there yet.
Like it'll be out and I keepstaring at it and I'm like it
needs something else.
I don't know what it needs.
It will make it out there, but,like the last, like few months,
every time I look at it I'mlike I don't know what it needs
(30:14):
yet, but you know it will getthere eventually.
Chaandani Khan (30:16):
So it's good You're listening to your gut and
that also speaks to yourdedication to provide the best
possible value, because you knowit's not there, so it's not
worth just flinging out into theuniverse.
It's helpful.
Bella Paige (30:27):
And like it.
Just it's not there yet.
I will figure it out what itneeds.
So I am so grateful that you'vecome back on and taken the time
out of your day to share howyou're doing again a year and a
half later, which is just crazyto me but so wonderful at the
same time.
So you've shared so much todayand I'm so grateful that you've
come back on as a repeat guest.
(30:47):
And to me it's crazy that itwas so long ago that you were on
here sometimes for somethingabout podcasting.
It just feels like yesterday,like for me, all these people
that I've met, it just it feelslike I've talked to everyone so
recently, but it's actually beenso long, and so I'm so grateful
that you've come on.
And so.
Is there anything else youwould like to add before we end
today's episode?
Chaandani Khan (31:08):
There is.
Thank you for asking.
One note actually just came tomind right now when you said
that is that the last time youand I spoke was a year and a
half ago, and this is just kindof a reminder to everyone
listening that a lot can happenin a year and a half.
A lot can happen in six months,in two weeks.
So just kind of a reminder toeveryone that even if you're in
(31:29):
a space where it feels likenothing is moving forward,
you're feeling lost, you don'thave a path forward, you don't
have answers, you're living injust a suffocating cloud of
uncertainty.
No, but as a product of time,things will move forward, and
that's not originally what Ithought I would share as our
closing note, but you know whatI have to go with my gut, and
(31:51):
that struck me, and so I hopethat that reminder really speaks
to somebody out there who needsto hear that message, and I'm
sending them a virtual hug aswell.
Bella Paige (32:00):
Yeah well, thank you so much for coming on.
Thank you a lot Need more thanjust this podcast.
Be sure to check out ourwebsite postconcussioninc.
com to see how we can help youin your post concussion life.
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
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