December 9, 2024 • 18 mins
Navigating life with chronic illnesses can be a multifaceted journey, often filled with unexpected challenges and personal revelations. Deborah shares her own experiences with diabetes and epilepsy, illuminating the stigma and fear surrounding these conditions. She reflects on her past, acknowledging how her perception of diabetes and seizures has evolved over time—from a topic she shied away from discussing to one she now openly embraces in her mission to support others.
You don't understand what someone's going through until you've walked a mile in his or her moccasins... (paraphrased from Mary T. Lathrop's "Judge Softly" poem).
Deborah, 13:38
Deborah highlights the importance of authenticity and vulnerability in addressing chronic health issues, encouraging her listeners to confront their own struggles and to foster acceptance of themselves and their circumstances.
- Deborah emphasizes the importance of authenticity in podcasting and discussing real-life challenges.
- The fear surrounding chronic illnesses can lead to misunderstandings and isolation in childhood.
- She acknowledges the emotional impact of having her project management taken over after a seizure.
- Deborah encourages listeners to find acceptance and balance amidst the challenges life presents.
The episode takes a poignant turn as Deborah recounts a pivotal moment during a live event when she experienced a seizure, leading to a shift in her role within the project she cherished. This change brings up feelings of vulnerability and loss, showcasing how quickly one can feel sidelined due to health challenges. Deborah emphasizes that life, with all its imperfections, is about adjusting and moving forward, even when faced with painful transitions. Through her candid storytelling, she invites listeners to embrace their own stories and find strength in community and shared experiences.
Chapters
- 02:02 Intro
- 04:13 Embracing Vulnerability: Sharing the Seizure Journey
- 07:31 Personal Reflections on Life with Epilepsy
- 09:41 Living with Chronic Illness
- 13:53 Understanding Diabetes Through Childhood Experiences
- 16:33 Finding Balance and Acceptance in Life's Challenges
Episode Resources
- Have You Walked a Mile in the Diabetic’s Moccasins? - “Before you cast a stone or falsely judge his conditions...Remember to walk a mile in his moccasins.” -Mary T. Lathrop, Judge Softly
- If You Poke Us… It Hurts - “If you prick us, do we not bleed? If you tickle us, do we not laugh? If you poison us, do we not die?...” William Shakespeare, The Merchant of Venice
How to Support DiabeticReal
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Episode Credits
Perfectly Wonderful World [Episode Music]
- 🎵 Perfectly Wonderful World 🎵 sung by Deborah E (written by Denny Martin & Jaimee Paul; mastered in Seaside Records Studio by Michael Anderson is available:
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(03:03):
Okay. Hello, everybody. Thisis Deborah, and welcome to another
episode of DiabeticReal. Now,I know last week, in talking about
Thanksgiving and eating allthat wonderful food, cranberry sauce,
pie. Oh, yes, talking aboutpie. I mentioned that this week I
(03:23):
would talk about diabetesmanagement and insulin and fun things
like that, but I think I'vechanged my mind. Didn't they say
that's a woman's prerogative?I think it's a people's prerogative.
Let's not. Let's not genderizeit. It's, hey, even animals can change
their mind. I've watched mydog Trudy change her mind. But before
(03:45):
I go off into a tangent,anyway, the other thing, too, and
I was thinking about this withthe podcast, I really, as I've said
before, I believe in beingauthentic, and I think that it's
more meaningful when to chatabout something that really hits
home that week. So even thoughI may plan the topics for 50 topics
(04:09):
in advance, includinginterviews and whatnot, sometimes
we just need to stop and talkabout what's on our mind. And of
course, you know, withpodcasting, we can change the order
around, but in this case,again, just talking about what's
on my mind. So here we go. SoI won't go all into it because we.
(04:32):
I can. Hey, I've got the giftof gab and I can babble. I think
I've mentioned it before. Myfather used to say I was inoculated
with a phonograph needle. Foranyone who doesn't know, with a phonograph,
it's like a record player, oldtime, little needle goes on the phonograph
and that plays music and.Well, anyway, enough said. You can
look it up on Wikipedia. I wasthinking about a situation where
(04:58):
I had started something thatwas very meaningful to me. And it
really, it doesn't matter whatthe it was so much as this scenario.
And I'll explain it as we goalong. But anyway, I started a particular
project in my brand as far associal media marketing, and I happen
(05:19):
to have a seizure. Now. All mylife I have thought, when I have
a seizure and we're talkingabout tonic clonic seizure. For the
longest time, I never wantedanyone to know about seizures. I
certainly didn't want to talkabout it. Certainly didn't want to
talk about it on a video or apodcast, for pity's sake. Didn't
(05:40):
want to admit it. But now I'mat that point in my life where not
only am I admitting it, Imean, I'm talking about it big time.
Why? Because I want to sharewith people who are struggling, struggling
in the acceptance of whateverchronic illness they may have, whatever
challenge they may have inlife. I want to help people in accepting
(06:02):
themselves, accepting theircircumstances, learning to live with
their circumstances, andthriving as a part of that. I have
to actually admit my situationin public in order to help other
people. So the seizures, Iused to think it was just about diabetes,
(06:24):
because that's what I wastold. And, yes, I can have seizures
as a part of the diabetes. Butmore recently, like just in the last
year or so, as I'm pretty sureI've shared before. But for those
who may not have heard it inanother episode, yes, I've been diagnosed
with epilepsy. Now, regardlessof what label you put on it, a seizure
(06:45):
is a seizure. And the realityis a seizure scares people. I'm not
saying it doesn't scare me,but, you know, after 120 of them,
and that's only recently, I'vehad a lot of seizures throughout
my life, and it doesn't makeme jump for joy. Well, I don't feel
(07:06):
really well after seizure, forone thing, but I have to say I'm
a little bit accustomed tothem. I don't feel well. So generally
I kind of lay on the couch orlay in bed a little bit to recover.
And it also depends on howmuch damage I've done to my body.
I mean, when I twisted my legaround a steel desk and sheared.
Not just broke. Sheared mytibia. Yeah, that one. That one hurt.
(07:31):
My husband had to get me drunkjust to handle the pain. But, okay,
now there's. I think I sharedthat with you, didn't I? Well, anyway,
so seizures can really freakpeople out. They've even sometimes
freaked my kids out. And mykids have been, unfortunately, accustomed
to seeing them. It's a sadthing. And I definitely tried not
(07:54):
to have seizures, but you cantry really hard in life not to have
something happen as far as achronic illness, and still your body
has it happen. So, again, Isaid I grew up thinking the seizures
were from the diabetes, and Idid everything that I could to manage
the diabetes, and I still hadseizures. I had four seizures after
(08:17):
each baby that I had. And nowwe've learned a lot, decades later,
that, yes, I have epilepsy andit was related to hormones. And it
makes sense. You're nursingbabies, hormones are involved. So
four seizures after eachpregnancy. But again, it freaks people
(08:39):
out. So back to this projectthat I had started and very passionate
about it. I had a seizure onAir. And that concerned everybody.
Even some of you listening tothis may even know about the event.
There's a recording of it,basically an audio live stream, and
(09:02):
Deb's having a seizure. But asa result, my co-host, bless her heart,
asked if she could be the hostinstead of the co-host. And, you
know, I understand that. Idon't know the reasoning. I didn't
ask her exactly what's thereasoning that we're switching roles.
That this project, this babyof mine, my project, my pet project
(09:25):
that I love, why are weswitching roles? And maybe it had
nothing to do with theseizure, and maybe I shouldn't make
that assumption that I had todo with the seizure. But even when
I try not to think that that'sthe reason, this kind of like, subconscious
thing keeps poking, saying,deb, if you hadn't had that seizure,
(09:46):
she wouldn't have asked forthe reins. And I'm not so picky that
it matters that we switchroles, host it. You know, it's not
about the functional aspect ofus both hosting this particular monthly
event. It's about. It isactually the aspect of who's starting
(10:06):
it up and who manages thefunctional back end of it. And I
won't go all into thetechnical aspect, but it has to do
with if somebody can delete itoff of X, formerly known as Twitter,
and whether it's accessible.So certain decisions like that and
whether someone can listen tothe recording on X and things like
that, and I no longer can makethose decisions because I'm not the
(10:31):
host. Now, we could obviouslydiscuss it, but I look at it and
it's like part of me wants tocry because it's no longer my project.
And I'm like, deb, you'rebeing silly. Communicate. Okay, going
off on another tangent. Let'sbring it back home a little bit.
The thing is, this goes on andhas gone on throughout my life. And
(10:56):
I'm sure that this happens toother people with chronic illnesses,
whether it's diabetes, whetherit's seizures, whether it's cerebral
palsy, whether it's cysticfibrosis. I'm just naming things,
not anything that I knowanything about, but I mean different
chronic illnesses. Becausepeople can be afraid of that which
(11:19):
they do not know. And I doremember that from when I was a child
and I didn't understanddiabetes. When I'm six, it's like,
oh, you have. And back then itwas, you have diabetes. That's what
they call it, diabetes. So Ihad diabetes. And then later I learned
that it Was called diabetes.Okay, whatever it's called. I had
(11:40):
this thing. And of course,back then it was like, you have sugar
diabetes. Okay, I have sugardiabetes. And I remember my friends
in elementary school becausenobody else in the school had it.
I think it's like, nobody elsein the district had it. Old people
had it. And I'm not sayingthat to be politically incorrect.
I'm saying that was the quote.It's like, oh, old people have this.
(12:04):
And back then, nobody wasexplaining that, oh, there's type
one and there's type two. Itwas just, oh, you're weird. That
was kind of the perception.You're weird because you have it
and you're a little kid. It'ssupposed to be for old people. You
know, somebody should havestopped and said, wait a minute,
you have diabetes mellitus.You have. Or diabetes mellitus, depending
on how you pronounce it. Butyou have the kind that affects little
(12:27):
kids. But see, that's notcorrect either, because that used
to be diabetes. Juvenilediabetes. No, it's type one, type
two. But I digress. The pointis, my friends in elementary school
thought they could catch itlike you catch cooties. It's like,
oh, no. Oh, no. She has this.This thing, and if we get near her,
(12:51):
we might catch it. And then wehave to have all these needles and
we have to get poked, and wehave this awful thing, and it's like,
we don't want to be near herbecause we might catch this awful
thing. We don't want it. Shehas it. But, but, but, but, but that's
not our problem. We don't wantto catch it. And so they'd pull back,
and of course that's going tomake a little kid sad. You know,
(13:11):
you want friends. But Iunderstood, because I didn't exactly
want diabetes either. And Itell myself, well, I wouldn't pull
back from my friend if she hadit or he had it, or would I? You
really can't judge. And I lovethat quote. And I may not get this
(13:34):
right, but it's like until youwalk a mile in his or her moccasins,
you know, you don't understandwhat someone's going through until
you've walked a mile in his orher moccasins. And I'm sure I didn't
quote that correctly, soplease forgive me if I've not quite
gotten that right. But theconcept is there. So throughout life,
(13:55):
I've had times where I've hadsomething similar to a promotion,
and then that's been removed.Because I've had a seizure or I've
had something related to thediabetes. Some kind of a. No matter
how hard I try to make surehealth is perfect, let's face it,
health isn't perfect. Lifeisn't perfect. Even for those of
(14:18):
you who don't have diabetesand don't have epilepsy and don't
have any chronic illnesses ofany kind, can you honestly say life
is absolutely 100% perfect?No, I don't think so. And if you
can, I'm sorry to say this,but at some point you're going to
stub your toe. Life is goingto happen. It's just the way life
(14:46):
happens to me. It's about howyou adjust to what life dishes out
to you. And that includes whenyou've designed something that's
your baby, you have yourpassion and it's sort of taken away
from you or shifts gears andyour friend is taken over as the
(15:11):
project manager or the hostand you're now second in command
or the co-host. And you know,it's not like that isn't the wisest
approach. I mean, hey, takinga step back and kind of a worldview
of this. If I'm over therehaving seizures and screaming and
(15:32):
live livestream, it makessense if, you know, someone else
takes control and continuesthe live stream and kind of ejects
me or mutes me or something orwhatever they can do as far as the
one that's in control. Becauseobviously if I'm having a seizure,
(15:52):
I can't control the particularlive stream or the event. So it's
not without merit. As far asthe decision to swap places there,
I understand that. I am matureenough to understand that decision.
Does it hurt my feelings?Sure. I'm human, you know, what's
that quote? As far as poke meand I will bleed or I don't know.
(16:15):
Again, I'm not doing reallywell on quoting some of these things
accurately. So go Google somequotes there and I'll look them up,
put them in the show notes.But life sometimes bites. Life sometimes
hurts. But as I've said beforeon this podcast, it's about finding
(16:37):
balance, finding acceptance,doing the best that you can do and
moving forward and being thebest you that you can possibly be
and accepting who you are.It's also about accepting others
and realizing your place inthe world. Don't put yourself down.
(17:00):
Don't put others down. Loveyourself and learn to love those
around you. This is Deborahand I'll catch you in the next episode
of DiabeticReal.
Okay. Hello, everybody. Thisis Deborah, and welcome to another
episode of DiabeticReal. Now,I know last week, in talking about
Thanksgiving and eating allthat wonderful food, cranberry sauce,
pie. Oh, yes, talking aboutpie. I mentioned that this week I
(03:23):
would talk about diabetesmanagement and insulin and fun things
like that, but I think I'vechanged my mind. Didn't they say
that's a woman's prerogative?I think it's a people's prerogative.
Let's not. Let's not genderizeit. It's, hey, even animals can change
their mind. I've watched mydog Trudy change her mind. But before
(03:45):
I go off into a tangent,anyway, the other thing, too, and
I was thinking about this withthe podcast, I really, as I've said
before, I believe in beingauthentic, and I think that it's
more meaningful when to chatabout something that really hits
home that week. So even thoughI may plan the topics for 50 topics
(04:09):
in advance, includinginterviews and whatnot, sometimes
we just need to stop and talkabout what's on our mind. And of
course, you know, withpodcasting, we can change the order
around, but in this case,again, just talking about what's
on my mind. So here we go. SoI won't go all into it because we.
(04:32):
I can. Hey, I've got the giftof gab and I can babble. I think
I've mentioned it before. Myfather used to say I was inoculated
with a phonograph needle. Foranyone who doesn't know, with a phonograph,
it's like a record player, oldtime, little needle goes on the phonograph
and that plays music and.Well, anyway, enough said. You can
look it up on Wikipedia. I wasthinking about a situation where
(04:58):
I had started something thatwas very meaningful to me. And it
really, it doesn't matter whatthe it was so much as this scenario.
And I'll explain it as we goalong. But anyway, I started a particular
project in my brand as far associal media marketing, and I happen
(05:19):
to have a seizure. Now. All mylife I have thought, when I have
a seizure and we're talkingabout tonic clonic seizure. For the
longest time, I never wantedanyone to know about seizures. I
certainly didn't want to talkabout it. Certainly didn't want to
talk about it on a video or apodcast, for pity's sake. Didn't
(05:40):
want to admit it. But now I'mat that point in my life where not
only am I admitting it, Imean, I'm talking about it big time.
Why? Because I want to sharewith people who are struggling, struggling
in the acceptance of whateverchronic illness they may have, whatever
challenge they may have inlife. I want to help people in accepting
(06:02):
themselves, accepting theircircumstances, learning to live with
their circumstances, andthriving as a part of that. I have
to actually admit my situationin public in order to help other
people. So the seizures, Iused to think it was just about diabetes,
(06:24):
because that's what I wastold. And, yes, I can have seizures
as a part of the diabetes. Butmore recently, like just in the last
year or so, as I'm pretty sureI've shared before. But for those
who may not have heard it inanother episode, yes, I've been diagnosed
with epilepsy. Now, regardlessof what label you put on it, a seizure
(06:45):
is a seizure. And the realityis a seizure scares people. I'm not
saying it doesn't scare me,but, you know, after 120 of them,
and that's only recently, I'vehad a lot of seizures throughout
my life, and it doesn't makeme jump for joy. Well, I don't feel
(07:06):
really well after seizure, forone thing, but I have to say I'm
a little bit accustomed tothem. I don't feel well. So generally
I kind of lay on the couch orlay in bed a little bit to recover.
And it also depends on howmuch damage I've done to my body.
I mean, when I twisted my legaround a steel desk and sheared.
Not just broke. Sheared mytibia. Yeah, that one. That one hurt.
(07:31):
My husband had to get me drunkjust to handle the pain. But, okay,
now there's. I think I sharedthat with you, didn't I? Well, anyway,
so seizures can really freakpeople out. They've even sometimes
freaked my kids out. And mykids have been, unfortunately, accustomed
to seeing them. It's a sadthing. And I definitely tried not
(07:54):
to have seizures, but you cantry really hard in life not to have
something happen as far as achronic illness, and still your body
has it happen. So, again, Isaid I grew up thinking the seizures
were from the diabetes, and Idid everything that I could to manage
the diabetes, and I still hadseizures. I had four seizures after
(08:17):
each baby that I had. And nowwe've learned a lot, decades later,
that, yes, I have epilepsy andit was related to hormones. And it
makes sense. You're nursingbabies, hormones are involved. So
four seizures after eachpregnancy. But again, it freaks people
(08:39):
out. So back to this projectthat I had started and very passionate
about it. I had a seizure onAir. And that concerned everybody.
Even some of you listening tothis may even know about the event.
There's a recording of it,basically an audio live stream, and
(09:02):
Deb's having a seizure. But asa result, my co-host, bless her heart,
asked if she could be the hostinstead of the co-host. And, you
know, I understand that. Idon't know the reasoning. I didn't
ask her exactly what's thereasoning that we're switching roles.
That this project, this babyof mine, my project, my pet project
(09:25):
that I love, why are weswitching roles? And maybe it had
nothing to do with theseizure, and maybe I shouldn't make
that assumption that I had todo with the seizure. But even when
I try not to think that that'sthe reason, this kind of like, subconscious
thing keeps poking, saying,deb, if you hadn't had that seizure,
(09:46):
she wouldn't have asked forthe reins. And I'm not so picky that
it matters that we switchroles, host it. You know, it's not
about the functional aspect ofus both hosting this particular monthly
event. It's about. It isactually the aspect of who's starting
(10:06):
it up and who manages thefunctional back end of it. And I
won't go all into thetechnical aspect, but it has to do
with if somebody can delete itoff of X, formerly known as Twitter,
and whether it's accessible.So certain decisions like that and
whether someone can listen tothe recording on X and things like
that, and I no longer can makethose decisions because I'm not the
(10:31):
host. Now, we could obviouslydiscuss it, but I look at it and
it's like part of me wants tocry because it's no longer my project.
And I'm like, deb, you'rebeing silly. Communicate. Okay, going
off on another tangent. Let'sbring it back home a little bit.
The thing is, this goes on andhas gone on throughout my life. And
(10:56):
I'm sure that this happens toother people with chronic illnesses,
whether it's diabetes, whetherit's seizures, whether it's cerebral
palsy, whether it's cysticfibrosis. I'm just naming things,
not anything that I knowanything about, but I mean different
chronic illnesses. Becausepeople can be afraid of that which
(11:19):
they do not know. And I doremember that from when I was a child
and I didn't understanddiabetes. When I'm six, it's like,
oh, you have. And back then itwas, you have diabetes. That's what
they call it, diabetes. So Ihad diabetes. And then later I learned
that it Was called diabetes.Okay, whatever it's called. I had
(11:40):
this thing. And of course,back then it was like, you have sugar
diabetes. Okay, I have sugardiabetes. And I remember my friends
in elementary school becausenobody else in the school had it.
I think it's like, nobody elsein the district had it. Old people
had it. And I'm not sayingthat to be politically incorrect.
I'm saying that was the quote.It's like, oh, old people have this.
(12:04):
And back then, nobody wasexplaining that, oh, there's type
one and there's type two. Itwas just, oh, you're weird. That
was kind of the perception.You're weird because you have it
and you're a little kid. It'ssupposed to be for old people. You
know, somebody should havestopped and said, wait a minute,
you have diabetes mellitus.You have. Or diabetes mellitus, depending
on how you pronounce it. Butyou have the kind that affects little
(12:27):
kids. But see, that's notcorrect either, because that used
to be diabetes. Juvenilediabetes. No, it's type one, type
two. But I digress. The pointis, my friends in elementary school
thought they could catch itlike you catch cooties. It's like,
oh, no. Oh, no. She has this.This thing, and if we get near her,
(12:51):
we might catch it. And then wehave to have all these needles and
we have to get poked, and wehave this awful thing, and it's like,
we don't want to be near herbecause we might catch this awful
thing. We don't want it. Shehas it. But, but, but, but, but that's
not our problem. We don't wantto catch it. And so they'd pull back,
and of course that's going tomake a little kid sad. You know,
(13:11):
you want friends. But Iunderstood, because I didn't exactly
want diabetes either. And Itell myself, well, I wouldn't pull
back from my friend if she hadit or he had it, or would I? You
really can't judge. And I lovethat quote. And I may not get this
(13:34):
right, but it's like until youwalk a mile in his or her moccasins,
you know, you don't understandwhat someone's going through until
you've walked a mile in his orher moccasins. And I'm sure I didn't
quote that correctly, soplease forgive me if I've not quite
gotten that right. But theconcept is there. So throughout life,
(13:55):
I've had times where I've hadsomething similar to a promotion,
and then that's been removed.Because I've had a seizure or I've
had something related to thediabetes. Some kind of a. No matter
how hard I try to make surehealth is perfect, let's face it,
health isn't perfect. Lifeisn't perfect. Even for those of
(14:18):
you who don't have diabetesand don't have epilepsy and don't
have any chronic illnesses ofany kind, can you honestly say life
is absolutely 100% perfect?No, I don't think so. And if you
can, I'm sorry to say this,but at some point you're going to
stub your toe. Life is goingto happen. It's just the way life
(14:46):
happens to me. It's about howyou adjust to what life dishes out
to you. And that includes whenyou've designed something that's
your baby, you have yourpassion and it's sort of taken away
from you or shifts gears andyour friend is taken over as the
(15:11):
project manager or the hostand you're now second in command
or the co-host. And you know,it's not like that isn't the wisest
approach. I mean, hey, takinga step back and kind of a worldview
of this. If I'm over therehaving seizures and screaming and
(15:32):
live livestream, it makessense if, you know, someone else
takes control and continuesthe live stream and kind of ejects
me or mutes me or something orwhatever they can do as far as the
one that's in control. Becauseobviously if I'm having a seizure,
(15:52):
I can't control the particularlive stream or the event. So it's
not without merit. As far asthe decision to swap places there,
I understand that. I am matureenough to understand that decision.
Does it hurt my feelings?Sure. I'm human, you know, what's
that quote? As far as poke meand I will bleed or I don't know.
(16:15):
Again, I'm not doing reallywell on quoting some of these things
accurately. So go Google somequotes there and I'll look them up,
put them in the show notes.But life sometimes bites. Life sometimes
hurts. But as I've said beforeon this podcast, it's about finding
(16:37):
balance, finding acceptance,doing the best that you can do and
moving forward and being thebest you that you can possibly be
and accepting who you are.It's also about accepting others
and realizing your place inthe world. Don't put yourself down.
(17:00):
Don't put others down. Loveyourself and learn to love those
around you. This is Deborahand I'll catch you in the next episode
of DiabeticReal.
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