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

Community

Join the DiabeticReal Podcast crew (fan club) at DiabeticReal.net. This is for ALL people, and not just diabetics. It is about the attitude of thriving and listening to our bodies, as well as living positively and encouraging each other.

Episode Credits

Perfectly Wonderful World [Episode Music]

• > available here <
• sung by Deborah E, Jazz Singer
• written by Denny Martin & Jaimee Paul
• mastered in Seaside Records Studio by Michael Anderson

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Listen to Perfectly Wonderful World

Listen to Perfectly Wonderful World by Deborah E

DeborahE

Okay. Hello, everybody. This is Deborah, and welcome to another episode of DiabeticReal.

Now, I know last week, in talking about Thanksgiving and eating all that wonderful food, cranberry sauce, pie. Oh, yes, talking about pie.

I mentioned that this week I would talk about diabetes management and insulin and fun things like that, but I think I've changed 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 genderize it.

It's, hey, even animals can change their mind. I've watched my dog Trudy change her mind.

But before I go off into a tangent, anyway, the other thing, too, and I was thinking about this with the podcast, I really, as I've said before, I believe in being authentic, and I think that it's more meaningful when to chat about something that really hits home that week.

So even though I may plan the topics for 50 topics in advance, including interviews and whatnot, sometimes we just need to stop and talk about what's on our mind. And of course, you know, with podcasting, we can change the order around, but in this case, again, just talking about what's on my mind.

So here we go. So I won't go all into it because we. I can. Hey, I've got the gift of gab and I can babble. I think I've mentioned it before.

My father used to say I was inoculated with a phonograph needle. For anyone who doesn't know, with a phonograph, it's like a record player, old time, little needle goes on the phonograph and that plays music and.

Well, anyway, enough said. You can look it up on Wikipedia. I was thinking about a situation where I had started something that was very meaningful to me.

And it really, it doesn't matter what the it was so much as this scenario. And I'll explain it as we go along.

But anyway, I started a particular project in my brand as far as social media marketing, and I happen to have a seizure. Now. All my life I have thought, when I have a seizure and we're talking about tonic clonic seizure.

For the longest time, I never wanted anyone to know about seizures. I certainly didn't want to talk about it. Certainly didn't want to talk about it on a video or a podcast, for pity's sake. Didn't want to admit it.

But now I'm at that point in my life where not only am I admitting it, I mean, I'm talking about it big time. Why?

Because I want to share with people who are struggling, struggling in the acceptance of whatever chronic illness they may have, whatever challenge they may have in life.

I want to help people in accepting themselves, accepting their circumstances, learning to live with their circumstances, and thriving as a part of that. I have to actually admit my situation in public in order to help other people.

So the seizures, I used to think it was just about diabetes, because that's what I was told. And, yes, I can have seizures as a part of the diabetes. But more recently, like just in the last year or so, as I'm pretty sure I've shared before.

But for those who may not have heard it in another episode, yes, I've been diagnosed with epilepsy. Now, regardless of what label you put on it, a seizure is a seizure. And the reality is 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've had a lot of seizures throughout my life, and it doesn't make me jump for joy. Well, I don't feel really well after seizure, for one thing, but I have to say I'm a little bit accustomed to them. I don't feel well.

So generally I kind of lay on the couch or lay in bed a little bit to recover. And it also depends on how much damage I've done to my body. I mean, when I twisted my leg around a steel desk and sheared. Not just broke.

Sheared my tibia. Yeah, that one. That one hurt. My husband had to get me drunk just to handle the pain. But, okay, now there's. I think I shared that with you, didn't I?

Well, anyway, so seizures can really freak people out. They've even sometimes freaked my kids out. And my kids have been, unfortunately, accustomed to seeing them. It's a sad thing.

And I definitely tried not to have seizures, but you can try really hard in life not to have something happen as far as a chronic illness, and still your body has it happen.

So, again, I said I grew up thinking the seizures were from the diabetes, and I did everything that I could to manage the diabetes, and I still had seizures. I had four seizures after each baby that I had. And now we've learned a lot, decades later, that, yes, I have epilepsy and it was related to hormones.

And it makes sense. You're nursing babies, hormones are involved. So four seizures after each pregnancy. But again, it freaks people out.

So back to this project that I had started and very passionate about it. I had a seizure on Air. And that concerned everybody. Even some of you listening to this may even know about the event.

There's a recording of it, basically an audio live stream, and Deb's having a seizure. But as a result, my co-host, bless her heart, asked if she could be the host instead of the co-host. And, you know, I understand that.

I don't know the reasoning. I didn't ask her exactly what's the reasoning that we're switching roles.

That this project, this baby of mine, my project, my pet project that I love, why are we switching roles? And maybe it had nothing to do with the seizure, and maybe I shouldn't make that assumption that I had to do with the seizure.

But even when I try not to think that that's the reason, this kind of like, subconscious thing keeps poking, saying, deb, if you hadn't had that seizure, she wouldn't have asked for the reins. And I'm not so picky that it matters that we switch roles, host it.

You know, it's not about the functional aspect of us both hosting this particular monthly event. It's about. It is actually the aspect of who's starting it up and who manages the functional back end of it.

And I won't go all into the technical aspect, but it has to do with if somebody can delete it off of X, formerly known as Twitter, and whether it's accessible.

So certain decisions like that and whether someone can listen to the recording on X and things like that, and I no longer can make those decisions because I'm not the host. Now, we could obviously discuss it, but I look at it and it's like part of me wants to cry because it's no longer my project.

And I'm like, deb, you're being silly. Communicate. Okay, going off on another tangent. Let's bring it back home a little bit. The thing is, this goes on and has gone on throughout my life.

And I'm sure that this happens to other people with chronic illnesses, whether it's diabetes, whether it's seizures, whether it's cerebral palsy, whether it's cystic fibrosis. I'm just naming things, not anything that I know anything about, but I mean different chronic illnesses.

Because people can be afraid of that which they do not know. And I do remember that from when I was a child and I didn't understand diabetes. When I'm six, it's like, oh, you have.

And back then it was, you have diabetes. That's what they call it, diabetes. So I had diabetes. And then later I learned that it Was called diabetes. Okay, whatever it's called.

I had this thing. And of course, back then it was like, you have sugar diabetes. Okay, I have sugar diabetes.

And I remember my friends in elementary school because nobody else in the school had it. I think it's like, nobody else in the district had it. Old people had it. And I'm not saying that to be politically incorrect.

I'm saying that was the quote. It's like, oh, old people have this. And back then, nobody was explaining that, oh, there's type one and there's type two.

It was 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's supposed to be for old people.

You know, somebody should have stopped and said, wait a minute, you have diabetes mellitus. You have. Or diabetes mellitus, depending on how you pronounce it. But you have the kind that affects little kids.

But see, that's not correct either, because that used to be diabetes. Juvenile diabetes. No, it's type one, type two. But I digress.

The point is, my friends in elementary school thought they could catch it like you catch cooties. It's like, oh, no. Oh, no. She has this. This thing, and if we get near her, we might catch it.

And then we have to have all these needles and we have to get poked, and we have this awful thing, and it's like, we don't want to be near her because we might catch this awful thing. We don't want it. She has it. But, but, but, but, but that's not our problem. We don't want to catch it.

And so they'd pull back, and of course that's going to make a little kid sad. You know, you want friends. But I understood, because I didn't exactly want diabetes either.

And I tell myself, well, I wouldn't pull back from my friend if she had it or he had it, or would I? You really can't judge. And I love that quote.

And I may not get this right, but it's like until you walk a mile in his or her moccasins, you know, you don't understand what someone's going through until you've walked a mile in his or her moccasins. And I'm sure I didn't quote that correctly, so please forgive me if I've not quite gotten that right. But the concept is there.

So throughout life, I've had times where I've had something similar to a promotion, and then that's been removed. Because I've had a seizure or I've had something related to the diabetes. Some kind of a.

No matter how hard I try to make sure health is perfect, let's face it, health isn't perfect. Life isn't perfect.

Even for those of you who don't have diabetes and don't have epilepsy and don't have any chronic illnesses of any 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 going to happen.

It's just the way life happens to me. It's about how you adjust to what life dishes out to you.

And that includes when you've designed something that's your baby, you have your passion and it's sort of taken away from you or shifts gears and your friend is taken over as the project manager or the host and 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, taking a step back and kind of a worldview of this.

If I'm over there having seizures and screaming and live livestream, it makes sense if, you know, someone else takes control and continues the live stream and kind of ejects me or mutes me or something or whatever they can do as far as the one that's in control. Because obviously if I'm having a seizure, I can't control the particular live stream or the event. So it's not without merit.

As far as the decision to swap places there, I understand that. I am mature enough to understand that decision. Does it hurt my feelings? Sure. I'm human, you know, what's that quote?

As far as poke me and I will bleed or I don't know. Again, I'm not doing really well on quoting some of these things accurately.

So go Google some quotes 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 before on this podcast, it's about finding balance, finding acceptance, doing the best that you can do and moving forward and being the best you that you can possibly be and accepting who you are. It's also about accepting others and realizing your place in the world. Don't put yourself down. Don't put others down.

Love yourself and learn to love those around you. This is Deborah and I'll catch you in the next episode of DiabeticReal.