Episode Transcript
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Speaker 2 (00:08):
Welcome to the Heal
and Stay Healed podcast, where
we talk about healing and, moreimportantly, staying healed from
chronic disease and otherailments and issues.
We'll cover all the crazythings about health and life the
good, the bad, the ugly and thehilarious.
My name is Kelly and I'm asurvivor and overcomer of severe
(00:31):
autoimmune disease, and I can'twait to share with you what
I've learned so that you canheal and stay healed too.
Thanks for listening and enjoythe show.
Welcome back to the Heal andStay Healed with Kelly B Haney
(00:55):
podcast.
I'm Kelly B Haney and I'm heretoday with Brian Haney.
That's right.
My partner in real life isgoing to be my partner on this
podcast today, who will bejoining us to talk about a very
important topic.
Welcome, Brian, to the show.
Speaker 1 (01:12):
Very excited to be
here.
Thanks for having me.
Speaker 2 (01:15):
So I invited Brian on
today as our first guest,
because the topic we're going tocover is an important one to
cover early, because it's one ofthe biggest things that someone
who is suffering with a chronicdisease or illness needs, and
that is support, both physicalsupport and emotional support.
And if you listen to my storyin episode one, then you know
(01:37):
that I certainly was in aposition where I needed some
major support, and Brian and Ihave been together for quite
some time.
Speaker 1 (01:46):
A little while.
A little while.
Speaker 2 (01:48):
We've reached that
point where it's hard to
remember how long, so Right.
So he was with me as I wasgoing through it, so he can
bring this unique perspective tothe table, which is going to be
helpful for anyone who is inhis position of having a loved
one who is ill and not reallyknowing what to do.
(02:10):
But before we get into thisserious yet important topic,
let's start off with some funquestions to get to know Brian.
Obviously I know him, but thisis a good opportunity for you,
the audience, to get to know hima little bit, and I have a few
questions for him that I havenot asked him in advance, so he
(02:30):
has had no time to prepare, sothis will be interesting.
Speaker 1 (02:34):
Here we go.
Speaker 2 (02:35):
Question one what
kind of car best describes your
personality?
Speaker 1 (02:41):
So, out the gate, I
would say my favorite car would
be like a 67 Thunderbird, but Idon't think that that actually
fits my personality.
I think, if I'm honest,probably a Shelby Cobra, maybe
of in and around the same ilk,is a little bit more appropriate
, because it's fun, fast,exciting, but also can go a
(03:03):
little too fast, can get alittle too out of control, and I
think that that probably speaksto both sides of my personality
in terms of how I like to live.
So the dangers of having aneurodivergent mind and kind of
being all over the place andgoing a million miles an hour.
So there you go, we're going togo with the Shelby Cobra.
Speaker 2 (03:21):
That was impressive
and in that answer you divulge
something the audience mightfind interesting is that you
mentioned your neurodivergent.
Speaker 1 (03:29):
That's right,
neurodivergent, super fun thing
to have for someone who'smarried to a person with type A
personality type, and that'sprobably about the exact
opposite and I know has gratedon your soul and your spirit for
a long time.
So thanks for sticking with mefor this journey.
Speaker 2 (03:43):
Yes, type A
perfectionism meets ADHD.
It's been an interesting ride.
We've been on Okay.
What kind of animal do yourelate to the most, and why?
This can be either what youconsider to be your spirit
animal or just one that remindsyou of yourself.
Speaker 1 (04:03):
I mean, this one's
pretty easy.
I love dogs.
I love all kinds of animals,don't get me wrong.
So animals of all types.
But just having had dogs mywhole life growing up, and just
the way that their personalitiestend to bring out the best in
us, I think that that's what Iwould easily say.
It would be both my spiritanimal as well as the animal
(04:23):
that I enjoy being around themost and interacting with the
most.
Speaker 2 (04:26):
Yes, I love dogs as
well, even though we don't have
one ourselves.
But I did hear something funnythe other day All dogs go to
heaven except Chihuahuas.
Those suckers go straight tohell.
Speaker 1 (04:39):
Probably accurate.
Speaker 2 (04:40):
No offense to
Chihuahuas.
Yeah, that's another story foranother day about the time I was
attacked while jogging by aChihuahua.
Speaker 1 (04:48):
Yeah, we've all had
those stories though.
Speaker 2 (04:50):
Oh yeah, Okay.
Do you have a TV show, movie oranother podcast recommendation
for us?
Speaker 1 (04:59):
Yeah, I mean I think
I would highly recommend anybody
just looking for a good show toenjoy.
I'd say suits.
I think a lot of people haveseen it or watched it and
enjoyed it, but really got a lotout of it, really loved the
characters and yeah, it was agreat show.
So that's what I'm going torecommend.
Speaker 2 (05:19):
Especially if you're
team Megan and Harry right.
Speaker 1 (05:21):
There you go.
Yeah, yet another reason.
Speaker 2 (05:24):
Okay, well, thank you
for humoring me, especially
given that I did not send thoseto you in advance.
That was pretty good, so let'stransition now get a little more
serious.
Just a very quick recap foranyone who hasn't heard my story
.
I had a year long monster, lifethreatening flare of ulcerative
colitis.
It was filled with ups anddowns, but basically I was sick
(05:47):
for an entire year and for aperiod of that time looked like
I might not survive.
Part of the time I was in thehospital, part of the time I was
home.
There was a lot of bouncingaround, we had our little baby
at the time at home and youstill had a full time job and
all the other responsibilitiesof life, when I was essentially
(06:08):
not a lot of help for thosethings during that time, for
obvious reasons.
So, setting that all up, I'mjust going to ask you to just
speak about what that was likefor you during that year.
Speaker 1 (06:21):
Yeah, well, let's
start out by giving the
appropriate shout out to yourmom, who was also super helpful
and involved, because withouther, I think probably both of us
would have devolved intoinsanity.
So she was amazing, thanks mom,it was probably, as anyone would
guess, it was extremelychallenging.
(06:41):
And I think it was challengingon two levels emotionally,
watching someone that you lovestruggle to the degree that you
did and literally get close todeath and be faced with a
scenario of, oh my gosh, like mywife could die.
That's an impossibly hard thingto experience for any spouse.
(07:02):
And so just I think thatgripped me on a lot of levels
that I probably even wasn'taware of at the time.
But just yeah, it was anemotionally provocative
experience.
But I think the other side of itthat was equally challenging
but in a different way, wasfeeling so helpless because I
(07:24):
wanted to be able to dosomething.
All the time I was like, whatcan I do to help you get better?
But the problem was, especiallyat this time in our lives and
in your life, the answer wasprobably not a whole lot, if
anything I could do, like I justcouldn't do anything.
Those two things, as I reflectback on it, were really really
(07:48):
significant.
And yet things that also havehelped, I think, try to give me
fuel, perspective and havetaught me quite a bit since then
, because I don't know that Ilook back on that and say I
handled that as best as I could.
There's probably a lot ofthings in retrospect when you go
back you wish you could havedone a little bit better, but I
did try to just be there for youand by your side the whole time
(08:10):
and hopefully that in and ofitself was meaningful.
But that was obviously a veryhard experience for both of us
to go through together.
Speaker 2 (08:19):
One thing that sticks
out to me during that time is,
in every relationship with twopeople, usually one person does
certain things and the otherperson does certain things, and
so suddenly you were therehaving to try to do everything,
including all of the things thatI had always done.
What was that like for you tojust suddenly be like okay, now
(08:41):
you have to literally juggleeverything.
Speaker 1 (08:44):
Yeah, that's also a
good example of a time where my
ADHD really worked against me,trying to juggle so many things
that were not just the thingsthat I needed to try to handle,
but now all the things that youused to handle and I couldn't.
That was quite a juggling actthat I was at the time, and
probably still to this day, notvery skilled or adept at knowing
(09:07):
how to navigate.
Speaker 2 (09:08):
Yeah, we laugh about
it now but I remember during the
times that I was home but stillbedridden and you would kindly
make me some breakfast and you'dbring in scrambled eggs and
banana or something I don'tremember what it was, that's not
important but you'd hand it tome and then go off to do
something else in the kitchenand I'd be like I need a fork.
(09:29):
And you'd be like, oh man, andthen you'd bring the fork and
I'd be like, can you get me somewater?
And after I'd asked you fivetimes to get some water, so yeah
, anyway, you tried.
That's what mattered.
Speaker 1 (09:40):
I did try, I didn't
starve.
Speaker 2 (09:42):
Yes, you did your
best and I appreciate it.
Speaker 1 (09:45):
Thank you.
We both got to grow throughthis and I think that we can
expand upon that probably ingreat detail in another episode.
But it was really hard to do it, but we did manage to do it
together the best that we knewhow.
Speaker 2 (10:01):
So you mentioned you
learned a lot by going through
this experience.
What would you do differentlyif you had the chance to do it
over again, being a caretakerduring this time?
Speaker 1 (10:12):
Yeah, I mean
Rewriting history.
I would have Certainly figuredout a few things in terms of how
to be my best self dealing withthe ADHD part, because I think
that that took the mostSignificant toll on me just
being able to function reallywell for you and not get
frustrated, because myfrustrations were never well,
(10:34):
they certainly were with thesituation, but they were really
more self frustrations, like whycan't I be better at doing
things that you would thinksomebody should be good at
handling?
So I think just I've certainlyfrom that period of time to
right now, spent a lot more timeunderstanding the adult level
impact that I, that the ADHD,has on me.
(10:55):
And I think the other part isjust there was a way for me to
give you a greater sense of ofjust Security in in what was
probably of just a constantlyscary dynamic.
I wish I could have done that alittle bit better.
I know I fell short in thatplace because I didn't feel it
myself.
I probably didn't have it togive away because I was so
(11:19):
scared and Not in in a fullplace emotionally.
But again, we're rewritinghistory and revining the clock.
I would have Made every humaneffort possible to have been
full of these things that Iwould have wanted to be able to
have then given to you To fillup your emotional cup and to
meet those needs as much as Ipossibly could have, because
(11:42):
clearly I knew I couldn't Dosomething to magically Heal you
and make you better.
So I think that that's thoseare the two areas I really think
the most about and wish I couldhave done way, way, way
differently now.
Speaker 2 (11:57):
So it's interesting
hearing you address this,
because I think there's noOwners manual, there's no clear
list of instructions of how totake care of someone who is
Suffering, especially in thiscase.
I mean, you had been with methrough earlier flares, but
those were Nothing in comparisonand I didn't need a lot of
additional things from youduring those times.
(12:18):
But this was unchartedterritory for both of us and I
think Sometimes you got to learnas you go.
It's not going to be likehere's five bullet points of how
to support your partner as theygo through chronic illness.
It sounds like it's more aboutjust being aware and available
(12:39):
and Adjustable to what yourpartner or loved one needs.
Would you say that that's fair?
Speaker 1 (12:45):
No, I think that
that's really good, because and
I think maybe the last point isto cut yourself as much slack as
you can, because if you'refacing something like this,
you're right, there isn't amanual, there's not, somebody
can't hand you the script tofollow, and that, for both
parties, is going to beExtremely hard because you just
(13:07):
don't know what do I do now, andusually most people are trying
to figure that out and so, in anuncontrollable, unwinnable type
of a situation, giving yourselfa ton of grace and slack which
is hard to do because you knowyou're both in this situation
when you just want it to change,you just want it to end, you
just want to get out, and thatbecomes all-consuming.
(13:27):
I mean, naturally, if you'refacing life and death, that's an
all-consuming experience.
Yeah, for sure in terms of justbeing being there, and again, I
hope that that was the part thatI look back on and am at least
proud of that.
You could have thepredictability of my presence.
I didn't run away from theproblem.
I didn't know what to do in theproblem.
(13:49):
I wish to God I could haveknown more, but I wasn't someone
who was going to run away or orbe absent from it, and I think
that that matters a lot the theactual presence of, of someone
that is just by your side andyou know you can count on.
But I I want to kind of ask youwhat were some of the things
(14:12):
that were the most helpful toyou during this time?
Speaker 2 (14:16):
Well, I think you
just said it was like I could
rely on you and even if I had toremind you to get me a fork or
glass of water or whatever, youdid it, you got it done.
And, yeah, I never had thesense that you were going to be
like screw this, I'm out, thisis too hard.
Forget it, you definitely.
(14:37):
I could see you struggling, butI could see you being
persistent in trying to figureout how to help, and that was
helpful and that meant a lot,and also the fact that you
didn't let the rest of our livesfall to pieces.
In terms of you, you were stillgoing to work.
Why don't you talk to us abouthow you did that?
Speaker 1 (14:58):
I do remember it was
so meaningful to me that I had a
manager at the time that knewwhat I was going through and was
just amazingly caring andsupportive, and that I had
people in my life in theprofessional domain that helped,
at least created the safety ofspace and understanding and were
(15:18):
empathetic to the situation,Because I think if that wasn't
the case, it probably just wouldhave all been overwhelming and
terrible.
But being able to step into theprofessional domain and have
that be a place of understandingwas really really impactful to
me and allowed me to manage whatwas really an unmanageable
dynamic.
Speaker 2 (15:39):
So it sounds like
maybe some good advice that we
can propose today is it's notjust the person who is sick and
suffering who needs the support,it's the caretaker that also
needs the support Because, as wejust said, if it wasn't for my
mom, if it wasn't for yourmanager at the time, things
would have looked a lotdifferent and we may not have.
(16:00):
Well, I shudder to think of howwe would have found our way out
of that situation, not justhaving our child cared for, but
having our finances not gocompletely to ruin.
And yeah, I could go down adark hole of what could have
happened if I didn't have thesupport I needed, but all the
more so you didn't have thesupport you needed to keep
(16:21):
everything from just completelyunraveling during that time.
Speaker 1 (16:26):
That is so incredibly
important to reconcile and to
think about, because we had areally great family dynamic and
we are super fortunate that thatwas the case for us, but also,
yeah, in terms of friends.
It took a village, there was ateam, and maybe not all of them
recognized or understood theimportant roles that they were
(16:47):
playing, but that was vital.
Speaker 2 (16:48):
Yeah, and I want to
shout out to all the friends
that were there to support usduring that time, just like my
mom couldn't have done itwithout any of you either, and
you know who you are.
Speaker 1 (16:59):
Yeah, no, I'm into
that, you know.
I think maybe that's anotherpoint to just leave as a nugget
for the audience that if youdon't have a network or if
you're feeling isolated andalone, do try to reach out and
find people to help you throughthis.
You just need to have enoughpeople in your life to help you
be able to go through something,because this is not something
(17:21):
that can happen successfully onyour own.
Speaker 2 (17:25):
And one thing I've
learned since then is that even
if people aren't clamoring orbreaking down your door offering
to help, it doesn't mean thatpeople don't want to help.
It often means that they don'tknow how to help.
And I think you know I hadpeople say that to me after the
fact and said you know, I wish Ihad done more, I just didn't
know what to do during that time.
So I think one if you are thatperson who has a friend who is
(17:49):
suffering and doesn't know howto help, ask or just do things
you know have a meal sent over,come over, do some laundry.
In the flip side of that, if youare a partner who is feels like
you're drowning, trying tosupport your loved one during
that time, get out your Rolodex,to use an old fashioned term,
and just start calling peopleand saying, hey, it'd be really
(18:12):
amazing if you could do this forme, you know, if you could run
this errand, if you could watchour child for a few hours,
things like that and talkingabout things we would do
differently.
That would be a good place tostart is that we would be not
shy about asking for more help,not just so you didn't get
burned out.
But so my mom didn't get burnedout, that's right.
(18:32):
And, yeah, we did have friendsthat were there, that were those
kinds of friends that wouldshow up and take care of things
and help us tremendously.
But the challenge is that whenthings are as dire as they got
for us during that time, there'sjust so much that needs to be
taken care of, Because oneperson is completely out of the
equation the sick person, thesupport person's capacity is
(18:55):
going to be very limited, andespecially for people in our
situation who not just had achild, but had a baby at the
time, we needed a ton of support.
So I am eternally thankful toall of those friends of mine who
showed up and just took care ofbusiness.
Again, you know who you are.
I love you all.
(19:15):
But the reality was we just wecould have used even more help,
probably from the people on thesidelines who really wanted to
help but just didn't know whatto do or how to give that help.
And so I think, in terms oflessons learned, it's okay to
ask for more help.
Even if you're alreadyreceiving help, it's okay to ask
(19:36):
for more.
Speaker 1 (19:37):
Definitely, that's,
right.
Speaker 2 (19:40):
And just a quick
little side note, it's not all
about coming over and doinglaundry or bringing a meal over
or babysitting for a while.
Additionally, one of the thingsthat meant the most to me
during my time, especiallyduring the days in the hospital,
were the friends who would justcheck on me.
(20:00):
One friend in particular, everyday around the same time, would
send me a message simply sayingare you any better today?
How are you doing?
I'm thinking about you.
And it was so meaningful to me,even though there were some days
where it was partly hard to getthose texts, when I couldn't
say that I was doing any better,when I had to say I'm not doing
(20:22):
better or I'm doing worse.
But it meant the world to mejust to get that text around the
same time every day.
I could rely on it.
Because when you're in thehospital for days, weeks on end,
you start to feel dehumanizedin the sense that it feels like
the world has moved on withoutyou.
So any little reminder thatthat's not the case can be very
(20:45):
helpful.
But that's just a littleexample of how small things can
make a big difference in termsof helping out a loved one who
is sick.
Speaker 1 (20:54):
Definitely.
Speaker 2 (20:56):
Okay.
So, Brian, as we start to wrapup, give me some adjectives to
describe a caretaker who is, Iwon't say ideal, but someone who
is doing their best in takingcare of a loved one who is going
through an illness.
Speaker 1 (21:14):
Empathy is always
probably number one, two and
three, because really trying tounderstand as much as you can
what somebody's experiencing andshowing up for them as best you
can when you understand it ishuge.
Persistence as well is anotherone.
Just constantly trying to doanything and everything that you
(21:38):
can in a situation that theremay not be much you can do, but
at least persisting inpersevering.
Maybe that's another one, acouple of Ps in there.
Just keep trying.
I think love and care probablygo without saying.
And I think maybe the last one,the last P well, we've got
(21:59):
three Ps mixed in with a bunchof other ones.
I know it's pretty good Ispatience, and I will tell them
myself that's maybe anotherthing that I wish I had done a
little bit better at.
But just being patient whensomebody's struggling with
anything chronically andcertainly to the level that you
were, you just gotta again keepshowing up and doing a lot of
(22:23):
things.
That can be monotonous orchallenging or hard, but you
gotta keep doing it and bepatient, because obviously both
of you wish the whole situationwould go away.
Yeah, if we can be patient andcarrying it uplifting and just
stay the course.
It's hard, you know, but youand I can both sit here.
We're both sitting here, ableto say there is light at the end
(22:45):
of the tunnel.
You can go through somethinglike this and come out on the
other end, and I don't know thatwe would have thought that at
certain intervals, but it ispossible.
Speaker 2 (22:53):
It sure is Okay for
our final topic of conversation.
What would you say is thebiggest landmine to avoid or
pitfall to avoid when carryingfor a loved one who is sick?
Speaker 1 (23:09):
Yeah, I think this
one is maybe easier to pinpoint
and I think that that's just tonot let the situation become
something that you turn on eachother in the relationship.
When you're both wrestling withsomething that is beyond your
ability to control or impactyour influence, and there are so
(23:32):
many challenging days, I thinkit's really easy to let that
grate on the relationship and tohave it be divisive, and there
are so many things that can fitthat type of a framework.
Staying in a relationship ishard, but especially in these
moments where two parties are sodesperate for change and are
(23:53):
right there with each other, itis pretty easy to kind of turn
around and project thatexperience on to the other
person.
There's safety in doing thatright.
There's seeming psychologicalsafety because the person's
there.
Obviously that's a destructivething to do to each other and so
just to be aware of that, don'tget broken by what is breaking
(24:15):
one of the two people in therelationship.
Speaker 2 (24:17):
And again, that
reinforces why it's so important
for you, as the caretaker, tohave an outlet, because you're
taking all this on and you'reprobably taking on the
frustrations of the sick personwho needs to get that out.
And being a caretaker is notjust making eggs and bringing
forks and water.
It's obviously helping with theemotional piece which we didn't
(24:40):
talk a whole lot about today.
I'm just not realizing.
But again, that's because thereis no playbook, there is no
manuscript here.
So it's just I guess we didtalk about it in the sense of
being there and I remember youknow I was able to tell you
exactly how I was feeling.
I was able to cry on yourshoulder, scream in frustration,
(25:02):
just whatever, and you were asafe space for that.
But then again, the flip sideis you needed outside support
then, so that doesn't all landon you and get stuck on you and
in addition to all of theemotions and frustrations and
anger and fear and everythingthat you were feeling, as well
as everything that I was feeling, yeah, again, hindsight being
(25:26):
what it is, that was the stuffthat I didn't handle very well
in the moment and then had tokind of unpack years afterwards
because it left scars.
Speaker 1 (25:36):
Obviously, any kind
of situation like this is going
to leave a lot of scars.
But, yeah, being able to haveoutlets, therapists or people
that you can find during thosetypes of experiences to help you
emotionally, not justphysically, is essential.
It would have made a massivedifference for us both if we had
more of that and we had a greatamount in our spheres of
(25:58):
friends and stuff.
But this is really, reallyimportant to try to navigate and
don't step on that landmine.
Don't let it become somethingthat takes you down.
Speaker 2 (26:07):
Live and learn.
That's what healing and stayinghealed is all about.
Speaker 1 (26:11):
Absolutely.
Speaker 2 (26:14):
Well, brian, this has
been a good conversation and I
hope that others have found itencouraging.
Just to summarize, our messageis again there's no playbook.
Definitely not Even having gonethrough this ourselves, we
can't be like.
Here are the five things youneed to do.
I think those adjectives youjust gave kind of summed it up,
and those were empathy,persistence, perseverance and
(26:37):
patience, with the additionalreminder that, for those who are
supporting someone who's sick,that person needs support as
well.
Speaker 1 (26:46):
Definitely.
Yeah, it does take a village.
Speaker 2 (26:50):
So there are many
more conversations that I want
to have with you, building offof this one.
I want to have you come back totalk about how to support your
loved one who is healing andstaying healed naturally,
because obviously the gettingsick part was just the beginning
of the story.
(27:10):
We have been through so muchtogether.
You have been with me throughmy entire healing journey and
have been 100% supportive, andso there is much that you have
to share and much advice thatyou have to give on that topic,
so we will have you back soon totalk about that.
Also, you've mentioned severaltimes today ADHD, and we will
(27:32):
have you back to talk about that, particularly the natural ways
that you have learned to helpmanage it over the years.
That will be a greatconversation, so I'm very
excited for that.
Definitely it's been fun.
We'll do it again soon.
Speaker 1 (27:47):
I look forward to it.
Thanks for having me.
Speaker 2 (27:51):
Okay, friends, I will
catch you for the next episode.
Thank you so much for yoursupport and if you have received
value from this today, pleaseconsider supporting my the
Wideed to produce this podcastby downloading, subscribing and
sharing it with your friends.
I am honored to walk alongsideyou on this journey as we heal
(28:15):
and stay healed together.