#1813 Family Ties - Part 2
Brother and sister Jason and Crystal confront generational type 1 diabetes, grief over their dad, and how community, technology, and honest conversations reshaped their care and family bonds.
Companies that Support Juicebox
Key Takeaways
- The Catalyst for Change: Sometimes it takes a new diagnosis in the family—like a young grandchild—to snap adults out of diabetes burnout and motivate the entire family to adopt modern management techniques.
- Re-evaluating Past Guilt: It's important to view past management struggles through the lens of the era's available technology rather than personal failure, reducing familial guilt and blame.
- Open Communication: Breaking the generational silence about diabetes is essential. Discussing the condition openly can strengthen family bonds and lead to shared support and better health outcomes.
- Community Support Matters: Finding a community—whether through a Facebook group or a podcast—shows you that you aren't alone, provides practical management tips, and helps break down the feeling of being "stuck."
- Finding Your 'Why': Discovering a powerful personal motivator, like wanting to set a safe, healthy example for a newly diagnosed toddler, can instantly shift a person out of decades of complacency.
Resources Mentioned
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Contour Next Gen Meter: contournext.com/juicebox
- Medtronic Diabetes (MiniMed 780G): medtronicdiabetes.com/juicebox
- Touched by Type 1: touchedbytype1.org
- Tandem Mobi: tandemdiabetes.com/juicebox
- Eversense 365: eversensecgm.com/juicebox
- Omnipod 5: omnipod.com/juicebox
- US Med: usmed.com/juicebox or call (888) 721-1514
- Juice Box Podcast Private Facebook Group: Search "Juice Box Podcast, type one diabetes" on Facebook
- Wrong Way Recording: wrongwayrecording.com
Welcome & Sponsor Messages
Scott Benner Welcome back, friends, to another episode of the Juice Box podcast.
Crystal Hi. I'm Crystal Kermeads. I am a type one diabetic.
Speaker 3 I am Jason, and I have I have talked to you a couple of times before, Scott.
Scott Benner This is part two of a two part episode. Go look at the title. If you don't recognize it, you haven't heard part one yet. It's probably the episode right before this in your podcast player. How would you like to share a type one diabetes getaway like no other?
Scott Benner Join me on Juice Cruise 2026. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type one diabetes. It's not just a vacation. It's a chance to relax, connect, and feel understood in a way that is hard to find elsewhere.
Scott Benner We're gonna sail out of Miami, and the cruise includes stops in CocoCay, San Juan, Saint Kitts, and Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility, and exceptional amenities. You're gonna enjoy a welcoming environment surrounded by others who get life with type one diabetes. I'm gonna host diabetes focused conversations and meetups on the days at sea. There's thoughtfully designed spaces, incredible dining, and modern amenities all throughout the celebrity beyond.
Scott Benner Your kids can be supervised and there's teen programs so everyone gets time to recharge. Not just the the kids going on vacation, but maybe you get to kick back a little bit too. There's gonna be zero judgment, real connections, and a whole lot of sun and fun on Juice Cruise twenty twenty six. Please come with me. You're going to have a terrific time.
Scott Benner You can learn more or set up your deposit at juiceboxpodcast.com/juicecruise. Get ahold of Suzanne at cruise planners. She will take care of everything. Link's in the show notes. Link's at juiceboxpodcast.com.
Scott Benner If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.
Scott Benner Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's episode of the Juice Box podcast is sponsored by the Kontoor Next Gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at kontoornext.com/juicebox.
Scott Benner Today's episode is also sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott. Would you like to unleash the full potential of the MiniMed seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox.
Reflecting on Responsibility and Guilt
Scott Benner Do you think you don't feel like that because you're a reasonably healthy human being, who understands that this isn't their fault? Or do you think it's you don't feel that way because you can blame your dad because if there is a lineage, it started with him and not you.
Speaker 3 No. I I think it's because I can look past the feelings part of it. I can look at the the technical side of it, the genetic side of it, and say, yeah. This is what we've been dealt. Nobody's fault.
Speaker 3 And the only way to deal with it is to, you know, take it by the range and just run with it and go with it and do what you have to do.
Scott Benner Yeah. I you know, I mean, you've probably been listening for a while. And, Chris, I don't know if you listen to me chitter chatter into this microphone or not ever, but I'm sure one reasonable high school level psychology class would have told me this. But I didn't realize that people have such a hard time doing things for themselves, but not a hard time doing them for other people.
Crystal Oh, definitely.
Scott Benner I didn't know that till I had all these conversations with people. I'm sure I was probably doing it myself and didn't know it. You know? But the amount of people who have type one diabetes who then take much better care of themselves because their children are diagnosed, And they have that same exact feeling that you guys said, which is the this was good enough for me, but it's not good enough for you. I don't know how many kids' diagnosis are saving their parents, but I think it's a lot more than you might think.
Scott Benner Really, really interesting, honestly, how it all kinda works. But what's even more interesting is that Crystal sorta, it sounds like, had the same, like, feeling about your child, Jason, as you did. You both were in separate places worried about your kid all of a sudden. And is Crystal, is that Yeah.
Speaker 3 I think that that happened to all three of us or or plus my mom, all four of us.
Scott Benner So All at once.
Speaker 3 Yeah. Yeah.
Scott Benner I'm sorry. Arden is calling me? No. What is happening right now? What is does everyone not understand the situation here?
Scott Benner Scotty's got a job.
Speaker 3 Not a job. You're just a podcaster. Come on.
Scott Benner Somebody's is blocking you? She's trying to go to school. Me? Is it me that's blocking or am I gonna have to tell you guys to hold on a second? Hold on a second.
Scott Benner Because we all went out last night and that so nobody's car is in the normal place.
Speaker 3 Does she not know how to drive other people's cars?
Scott Benner I don't know what she knows. She does. No. She knows how to drive other people's cars. My kids are just there.
Scott Benner They could be princesses sometimes. They're like, hey. Your car's in my way. Come get it. Instead of, like, move it out of your way.
Scott Benner Well, we'll wait for her to respond. If you stop and sit back, is that the story of your family or do you think that's just really the beginning of the story? Like, to me, this is the that's the preamble. Right? Like, now moving forward, like, we can throw all that away and understand that this is your history.
Scott Benner There's part of me that wants to restart the conversation with today with, you know, Wesley's diagnosis and where you guys have gone since then. If you have a little more time, I'd like to keep talking if that's okay.
Speaker 3 I have plenty of time.
Scott Benner Awesome. Okay.
Crystal Me too. Alright. I don't work till tonight. So
Scott Benner Okay. She said, I got out. I had to do a 25 turn. Okay. Okay.
Scott Benner Alright. So that's good. So we don't have worry about that anymore. Okay. So let's do that.
The Turning Point: Wesley's Diagnosis
Scott Benner Let's pretend for a second that we all just knew your story and didn't need to be filled in the way we just were. Spend the next twenty minutes or so trying to figure out the rest of it. Let's pretend that this all starts with Wesley's diagnosed Jason at what age?
Speaker 3 Two and a half.
Scott Benner Two and a half. You've had diabetes since you were
Speaker 3 18.
Scott Benner 18. Your sister had it a couple of years before you. Your dad has it his whole life, basically. Your son's diagnosed. You guys realize that your situation is not such that you would like it to be his situation.
Scott Benner What is adjusting that look like for all of you?
Speaker 3 For me, you know, I paid attention to what my diabetes was doing, but it made me pay attention more because I was having to constantly, with my wife, pay attention to what Wesley's numbers were doing and what you do with a a two and a half year old type one diabetic that no one in our family, except for my grandma, really had experience with. So it made me focus, and it made me take take the time to make it a priority.
Scott Benner Okay. More on the details, more on the finer points of it because the tolerances are so much smaller with a little kid.
Speaker 3 Absolutely.
Scott Benner Jason, do you I'm gonna ask you a question about me. Do you think that that might be why me talking about it is helpful to people? Because do I take it to a different place than some people do? Because I started with a little kid.
Speaker 3 Yeah. I think so. I think that that helped me. Like, when I first started listening to you, like, I I felt there are some similarities between, you know, like, what you were talking about and doing and what I wanted to do. Mhmm.
Speaker 3 Or, like, what I wanted to do and what I had been doing. Because I didn't I didn't find you till, you know, after Yeah. Well, after he was diagnosed. But I I kinda saw that, and it kind of made me think, yeah, there's there's more than just me out here trying to do this.
Scott Benner That community part helps you too.
Speaker 3 Oh, huge.
Scott Benner Yeah. The knowledge.
Speaker 3 I mean Yeah. You can probably tell by the sheer number of posts I've made in the Facebook group post group.
Scott Benner Yeah. No. No. I I can't actually. You're you're passionate about it in a way that I I really appreciate.
Scott Benner As you were talking, thought I wonder if that's part of, like, the way I think about it is because I had to think about it for a person who weighed nineteen pounds that couldn't really tell me what was going on with tools that didn't that weren't really nearly as valuable or as insightful as they are now.
Speaker 3 When Wesley was diagnosed, like, I'm not sure, Like, Dexcom was really a huge thing at that time.
Scott Benner Mhmm.
Speaker 3 So it was still and it it really wasn't a thing for two and a half year olds. So I just remember vividly having to wake up two or three times every night and go in and check his finger and, you know, deal with it appropriately at that time. It was it was extremely difficult. Again, it's just something I absolutely had to do, and I had to do a much better job than what I've been doing for myself or a much better job than Crystal had done or a much better job than my dad ever did. It's just imperative that I succeed.
Scott Benner Mhmm. So then you you find that success with your son how, like, in how much time? How long did it take you to transform what you knew and then apply what you thought you needed to do and get him into a place that you were like, oh, good. This is good. Do you know how long that took?
Speaker 3 Zero.
Scott Benner You got to it fast?
Speaker 3 Yeah. Right away.
Scott Benner And then did you then say, I'm gonna apply it to me now, or were you doing
Speaker 3 it Yep.
Scott Benner At the same time?
Speaker 3 I was the I was the guinea pig for Wesley. So anything that I wanted to do to Wesley, I I did myself first.
Scott Benner Okay.
Speaker 3 So I got way better control of myself and then worked on him simultaneously with the same kind of methods.
Scott Benner This is basically, like, the plane just crashed and Jason's the only one that stood up and he's gonna get everybody out one at a time. So you get him out and get you out, then do you go to your sister next or your dad?
Speaker 3 Our dad just kinda watched from the sidelines and at that point in time, I think he actually started to talk about it and ask questions, and he seek advice from Crystal and myself.
Scott Benner Wow. At that point, how old is he about? Oh, you're gonna to
Speaker 3 answer that one, Crystal.
Crystal Oh my goodness. So Wesley's how old? He's 14. 14. So
Scott Benner Eleven years been ago.
Crystal 60.
Scott Benner Oh, that's sad, isn't it? Fifty seven years with diabetes, and he's starting to ask questions. Yeah. Yep.
Crystal It took a long time for dad to openly talk about his diabetes. Yeah. Yeah. Even with Jason and I being diagnosed, I don't remember ever having, like, conversations about diabetes with that.
Scott Benner Yeah. I just think at a certain time with the way treatment was in certain, you know, historical, like, stopping points, there's there's probably wasn't a lot to talk about, really. Like, I take the shot. I eat. I don't die.
Scott Benner I take it again. I'm not dead. It must have worked. Yep. His experience, he puts it I mean, doesn't put it on you, but it becomes your experience.
Shifting the Family Dynamic
Scott Benner It colors your life the way it does. Jason, for some reason, has a feeling of, like, maybe this isn't good enough. I should try harder, but that's not really a ton of I mean, you're Jason, you're just really using more insulin. You're just being more aggressive with your insulin. Right?
Scott Benner And then Yeah. Your son comes, you pull the whole thing together like this. I know why you did it for him. I guess I'll wonder why your dad, like, jumped in two feet as well, like, with both feet. Like, I wonder if he didn't think, like, oh my god.
Scott Benner What am I not doing for myself that I should be doing? Like, because you start talking about what you're doing for Wesley. He must it must sound foreign to him for five seconds, but he also knows he's not doing well. So he must have really trusted what you were doing is what I'm saying.
Speaker 3 Yeah. And that's I kinda it's it's weird to me to think that too, like, how you said that. Like, you know, growing up, like, your your dad knows everything. Right? Your dad is the man.
Speaker 3 He does it. He's he's tough. He can handle it. But then to kinda see him start to relate back to myself and Crystal about his struggle, like, he's coming out, like, hugs and saying, oh my gosh. Oh my gosh.
Speaker 3 Oh my gosh.
Scott Benner It's Yeah.
Speaker 3 We're starting to hint to actually wanting to to talk about it. And for him, that's really opening up.
Scott Benner Mhmm.
Speaker 3 It was kinda it's just weird to look back on that and think that he's seeking advice from me. Yeah. You know, he's he's almost, like, treating me like, hey. You're the may you're the you're the guy that knows this.
Scott Benner Yes. Finally, one of us figured something out. Like, awesome. Yeah. Yeah.
Scott Benner Yeah.
Speaker 3 Yeah. And then I think him seeing eventually, you know, when Wesley first got his Dexcom and his Omnipod, I think after he saw that, like, he's like, well, there that's that's pretty neat. Probably makes things a little bit easier. I don't have to go give myself shots in the bathroom and hide it from everybody. I can just do it from right here.
Scott Benner Yeah. Just opened his life up for him.
Crystal Yeah. And I think him seeing the Omnipod versus my Medtronic that I had back then
Scott Benner Mhmm.
Crystal And not having the tubing.
Scott Benner He was like, There's more than I know with that.
Crystal Lifestyle. He, you know, he was he was scared to death that it was just gonna fall out and that it would just not work because it was just gonna fall out all the time.
Scott Benner It's funny what people worry about all the time. You know? And I'll tell you this too. Like, Justin, I feel like you know me pretty well. Right?
Scott Benner And I'm a very emotional person. I don't have any trouble telling people how I feel. And, you know, last night I don't know if this got said while we were recording or not, but last night, I basically, I went to a concert last night. It was my Christmas gift. My wife, myself, and both my kids went to see Yo Yo Ma perform last night.
Scott Benner It's my fourth time seeing him. I have fairly strong beliefs that if you wanna understand actual calm and centered and connection to the world, like, you should go sit very quietly in a in an auditorium and listen to yoyo and I'll play this cello. And so I'm having a a wonderful time, and I am thrilled that my kids are there. My wife's come with me to every one of the concerts that I've been to. I don't I think she likes it.
Scott Benner I don't think she gets out of it what I get out of it. And the truth is is I don't even know how to quantify what I get out of it. I really I've had trouble explaining it to people. But there are certain notes that he hits on that cello that just make me cry, and I don't even know why. And not like blubbering crying, just tears just running down my face.
Scott Benner Like, it hits me somewhere right in the middle of my soul. And I'm thrilled to be there. I'm thrilled that the kids heard it. I don't think that it's their, you know, their jam. I don't know if they're gonna go home and download the complete works of Yo Yo Ma or anything like that, but I knew that them being there was important and that they would take something from it.
Scott Benner And when we were getting up to leave, there were some time while people were passing by that we just were standing at our seats, And I wanted to grab everybody and hug them and tell them how much it meant for me the to me that they were all there with me. And I just said, like, I'm really glad you guys are all here tonight. That's all I said. Like, I had so many thoughts in my head that I wanted to share, but those other three people, they're not me. Arden's the closest to me.
Scott Benner Like, I can be a little more open with her because she understands how I am, but my wife and my son are a little more, like, they're not as, like, connected that way. And so I seem a little, like, goofy to them when I'm like that, if that makes sense or not. Like, so anyway, so in that very should be easy to to share a moment, I censored myself. And and now I'm trying to put myself in your dad's position, and he's got this thing he's been living with his whole life. He doesn't know how to take care of himself very well.
Scott Benner He sees it happen to his kids after he was already worried it was gonna happen to his grandchildren. Like, it must have been a real you guys must have created a real open space for him to to start talking to you about like that. I wonder if you know what a nice job you did for him that he was able to talk like like that. Unlike other systems that will wait until your blood sugar is a 180 before delivering corrections, the MiniMed seven eighty g system is the only system with meal detection technology that automatically detects rising sugar levels and delivers more insulin as needed to help keep your sugar levels in range even if you're not a perfect carb counter.
Scott Benner Today's episode of the Juice Box podcast is sponsored by Medtronic Diabetes and their MiniMed seven eighty g system, which gives you real choices because the MiniMed seven eighty g system works with the Instinct sensor made by Avid, as well as the Simplera Sync and Guardian Force sensors, giving you options.
Scott Benner The Instinct sensor is the longest wear sensor yet, lasting fifteen days and designed exclusively for the MiniMed seven eighty g. And don't forget, Medtronic diabetes makes technology accessible for you with comprehensive insurance support, programs to help you with your out of pocket costs, or switching from other pump and CGM systems. Learn more and get started today with my link, medtronicdiabetes.com/juicebox.
Scott Benner Contournext.com/juicebox. That's the link you'll use to find out more about the Kontoor Next Gen blood glucose meter.
Scott Benner When you get there, there's a little bit at the top. You can click right on blood glucose monitoring. I'll do it with you. Go to meters. Click on any of the meters.
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Scott Benner Contournext.com/juicebox.
Scott Benner And if you scroll down at that link, you're gonna see things like a buy now button. You could register your meter after you purchase it. Or what is this? Download a coupon.
Scott Benner Oh, receive a free Kontoor Next Gen blood glucose meter. Do tell. Kontoornext.com/juicebox. Head over there now. Get the same accurate and reliable meter that we use.
Healing and Communication
Speaker 3 And I feel like after that happened, I felt closer to my dad and, like, closer than I probably ever have
Scott Benner Mhmm.
Speaker 3 Because we had that that open lane of conversation then. I think it helped our relationship. You know, type one diabetes helped our relationship. Thank you. We're the worst disease ever.
Scott Benner Well, yeah. But in your situation, it's a catalyst or it could have been. Yeah. And it ended up being. This is true through all walks of life.
Scott Benner Right? Like, whether it's me at the concert being more emotional and not having the nerve to be as emotional as I was or this, but when people create space I god. I sound like a therapist. But when people create space where you feel comfortable, it's a really big deal and and it could be done in all all different parts of people's lives and it just doesn't happen frequently enough. I think your story outlines why it's so important.
Scott Benner I hope that's what people are hearing, honestly. Instead of me telling a, you know, a quick story about something that happened to me last night, this is a you guys laying your life out a little bit here and letting people hear about it. I I think it's really awesome. So so you guys all everyone levels up then. Right?
Scott Benner Wesley gets us started at great level. Jason, you level yourself up. Crystal, you level up your care. Crystal, I gotta ask you, is there any points where you think, like, well, hell, if this would've happened sooner, I coulda had a baby?
Crystal I mean, possibly, but I had already come to the, you know, come to grips
Scott Benner You're healthy enough not to torture yourself about that.
Crystal Yeah. Exactly. Yep. Yeah.
Scott Benner Good for you. That's lovely. I'm I'm very happy for you because there's nothing wrong with the decision you made. You know what I mean?
Crystal Yeah.
Scott Benner Yeah. Yeah. Oh, that's awesome. Alright. Now what am I not asking you guys?
Scott Benner Like, what don't I know about your lives that I should be asking you about? Like, what what are you sitting here because everybody always gets to the end and goes, it didn't go the way I thought it was going to. What should we be talking about that I don't know to ask you about or I haven't led you towards?
Speaker 3 You know, after that kind of all hit with Wesley, then it, you know, hit again couple years later with Cooper. And I think it still kinda had that same effect. It kinda opened the door up even more. It kinda got funny on Facebook because my dad would start, you know, commenting on things that I'd post about type one diabetes, and it it seemed like he was paying more and more attention to it.
Scott Benner Mhmm.
Speaker 3 And I think if all of this would've happened a lot sooner, I think his outcome in life probably would've been a lot better. You know, he didn't die from type one diabetes, but it definitely contributed to his death.
Scott Benner Right.
Speaker 3 I think he could've lived lived longer if this all would have happened sooner.
Scott Benner And, Jason, is that like, does that are are you not healthy enough not to know that's not your fault?
Speaker 3 Oh, I know it's not my fault. Like
Scott Benner Did it impact you?
Speaker 3 Yeah. It impacted me. You're gonna talk to somebody that helped me deal with impact here this afternoon probably.
Scott Benner Yeah. Oh, yeah. I oh, Erica later. When I record with Erica later.
Speaker 3 Yep.
Scott Benner Yeah. I I know we've gone over it before, but, like, to put it all in one place, like, you have some feeling, like, if this all would have just happened sooner, maybe my dad would be alive.
Speaker 3 And Yeah. I think he would have lived longer.
Scott Benner Yeah. And then how do you work through that on your end?
Speaker 3 I just have to keep, you know, remembering the I can't keep going back and saying what could have happened because I can't change that. Mhmm. The only thing, you know, you can really do is just keep keep trudging forward and learn to deal with your your past regrets and keep that under under control and in a good spot in my brain.
Scott Benner Crystal, did you know that Jason was going through this, or were you going through anything similar?
Crystal I didn't know to that depth. No. I completely sympathize with it because I had the same feelings. You know, if I had talked to Deb earlier about, you know, my experience with my Medtronic, would he have had better control later on in his his life that he could have prevented the stroke, could have prevented the heart attack, could have prevented that stuff.
Scott Benner How is it, Crystal, to hear Jason talk about it? How does it make you feel when you hear how are you being what he went through?
Crystal That I'm glad it wasn't just me. Because I don't think that Jason and I have ever talked anything about, like, this stuff before together.
Scott Benner Yeah.
Crystal At least this and this death depth. No.
Scott Benner It's interesting. So your first thought isn't like, oh, my my poor brother. Your your thought is like, oh, god. I felt that too. Like, is it almost comforting to know that somebody else felt it?
Crystal Yes.
Scott Benner Yeah. You don't you don't mean like, I'm glad someone else is suffering to you. You mean like, oh, gosh. Like, you you're actually finding a community within your brother's experience right now of two people.
Crystal Yes. Yes.
Scott Benner Jeez. Well, this is awesome. I have thought once during this conversation, there is no other place on the planet for two people with type one diabetes to have a conversation like this that's going to have the opportunity to be heard by so many other people who could benefit from it. But I'm, in the moment, just happy for you guys that you're able to have this conversation. I think the bigger takeaway I'm having from this is that I'm I'm trying trying to stop myself from saying to all the people who who are listening, see, just talk to each other.
Scott Benner Like, I don't like there to be after school special, like, takeaways from the podcast. I'm hoping people get these things out of it on their own. But my god, like, if you're not listening and thinking, we should just all be talking to each other more frequently and being honest about how we feel. Like, look at all the good that would come from it. Yeah.
Scott Benner If you're not taking that from this story, I I don't know what to I don't know what to say about that. You know? I just think it's really important. And I'm really grateful for you guys to to share this stuff with me. So thank you for I'm not even stopping you from talking right now.
Scott Benner I just wanna thank you. Yeah. Yeah.
The Value of Community
Speaker 3 I Like, I agree with you, Scott. Like, it's just like the Facebook page. Like, the more communication people have and the more stories people hear, you know, it it allows you to open up more and share share those those shared experiences or as new experiences with other people that are kinda walking in shoes that are very similar to yours, it helps. It makes you feel seen. It makes you feel heard, and people can sympathize with you and and guide you who you know, guide you in a in a good direction, hopefully.
Scott Benner And I don't even know that it matters if you understand how it's helping. Just trust that it is because I think I do see people get bound up sometimes by, oh, like, what's what good is this of me sharing how I feel or, you know, or boohoo, you're all sitting together complaining together or what, you know, whatever kind of sometimes alternative harsher reactions people can have to watching, like, a community help each other at first. You You know what I'm saying. Right, Jason? Like, sometimes people come in there and you realize, like, oh, they're very new to this and they're resistant to this idea of being open and letting that openness kinda wash back on them and help them.
Scott Benner You've seen that happen before. Right?
Speaker 3 All the time there. Yeah.
Scott Benner Right. But also, we've been at it long enough. I know I have been. I I think you have been too. Like, long enough to know that a lot of people, if they hang in there, they get to it.
Speaker 3 You know? Right. Exactly.
Scott Benner Yeah. Which is because sometimes people come off really harshly at first. You're like, oh, they'll figure it out eventually. They're they're actually going through a really what I've come to think of is a very natural progression of I'm too broken. You can't help me.
Scott Benner This is all bull and then they they kinda have to sit there and, you know, in it for a little bit before it makes more sense to them. And they can kind of, like, give themselves over to the idea that having these other people around them whether it's virtually or not is really valuable. It's what you know, it makes me upset sometimes when you hear people pontificate in, you know, YouTube videos or, you know, ever you know, people's connections have to be in person, and I agree with that. I think I think we should all have in person connections with people. I'm not saying we shouldn't.
Scott Benner But in unique situations like this where you just don't have the opportunity to meet that many other people who have a similar experience, you almost have to go to the Internet for that. Like, there's just I mean, you can try as hard as you want to start a local group. You're just not gonna reach enough people to actually put a group together.
Speaker 3 Right.
Scott Benner And to actually get enough voices together that enough voices and enough perspectives together where the value works. I don't know if that makes sense or not. Like, I almost think of the community like a stew. Like, you can just put beef and carrots in it. If you want it, it won't be bad.
Scott Benner Right? But it is better if there's also potatoes in there and if you cook it longer and slower. Like, there's just a lot of variables that make that community the value that it is. And those variables are the extensive number of people and perspectives and experiences that are all there that kinda create that stew at the same time.
Speaker 3 Yeah. And it's and it's like the Facebook group and the podcast are, like, they're always there. Like, you know, I've mentioned this before, but, you know, I do a lot of work with breakthrough t one d. Mhmm. And, you know, they have all these events.
Speaker 3 Like, I I just filmed one event last night, but these events only happen maybe once a month. And they're not events that are focused around care or dealing with a current struggle. It's more about, you know, those are about raising funds and just introducing people to each other. They're not opening up deep conversations that happen on the podcast. They're not opening up conversations that happen in the Facebook group.
Speaker 3 And, you know, solutions aren't being like, now solutions aren't being made in these fundraising events.
Scott Benner Mhmm. The truth is is that you might not be able to go that night or the thing you need might not be mentioned and then you'll think it's valueless or whatever. Like, so there's something about the accessibility of the conversations, the accessibility of the group that allows for it to happen on your time. And therefore Exactly. In the moment you need it, it still exists, and it's right there, and it's ready to go.
Scott Benner When I tell people about the value of the group, one of the metrics I give them is that even at its slowest point, which is three AM eastern time, even at its lowest point in twenty four hours, there's still 50 to a 100 people in there. And that means there's no time when you're not gonna reach somebody.
Speaker 3 Right.
Scott Benner Yeah. I think that is important. By the way, most hours of most days, there's at least a thousand active people in the group pretty much all the time.
Speaker 3 Yeah. And that's, like, that's a thousand people that are looking for something related to t one d. It's just there. It's just such such a great resource. Like, I I think what you've built, Scott, is has changed so many people's lives and perspectives, and it's it's really just kinda opened up a door for people to to walk through if they want to.
Crystal No. We know we didn't have that.
Scott Benner No. Yeah. Crystal, it's part of what I'm trying to get across when I'm, like, picking through your life is that it's not it's definitely not anybody's fault. Like, nobody it it it would be like blaming a caveman for not having a hand warmer. You know what I mean?
Scott Benner Like, it's just not it just didn't exist then. Yeah. You guys were doing great. Like, I mean, honestly, if you look at your dad and you go back twenty years before that even or thirty years before that, like, imagine how jealous those people would have been at your father's care. You know what I mean?
Scott Benner Like, they would yeah. They would have been like this guy is is just out there, like, living life. And so it's always gonna be like that. We just happen to have lived through a unique leap. The Internet is a unique leap.
Scott Benner The technology is a unique leap, and and so we were lucky enough to be involved in it. I am quite sure that a hundred years from now, people are gonna look back at your care and Leslie's care and my daughter's care, and they're gonna be like, these people were lucky to be alive. That'll continue like that. It doesn't often happen in somebody's lifetime. I know I sound like an old person, but the day I got my first iPhone, I was excited because it would hold my contacts from my phone in it.
Scott Benner Like, think of how ridiculous that is. I was like, oh, now my contacts are all in one place. That was the value of an iPhone on day one. And now that's the least of what you think about on your iPhone. As a matter of fact, when you need somebody's phone number, the contact list isn't even the place you go to get it usually.
Scott Benner Then look at that leap in this what it was a I mean, when did it come out? It's not even twenty years yet. Right? Where the Internet goes from, like, you know, show me boobs and twenty five minutes later, half a picture is downloaded on your AOL to, hey, Siri. I think this happened or or high you know, or you're in an l l a large language model, like, no matter which one you you use, and you're asking complicated questions and getting back complicated answers that make sense, like, inside of twenty years.
Scott Benner It's it's phenomenal. You you know, real it really is. And and then it's important to remember that, like, your poor dad was there before that. And, like, it just you know, I I don't know. I really appreciate you laying all this out.
Scott Benner I hope it also makes you feel better about his his life because, I mean, it sounds to me like not only did he do well for himself with the tools he was given, but when the opportunity arose to do better for you guys, he jumped right in too. Like, it doesn't sound like he held himself back when he finally said, oh, this is an inflection point. Like, we all need to be paying attention. And he did
Speaker 3 I agree with that.
Scott Benner Yeah. And he did as an older man too, which is impressive too. Sorry. I cut you off, Crystal. Did I make you guys
Crystal cry? I just Me too.
Scott Benner Is anybody crying? No. I can't believe you guys haven't cried yet. You're really you're killing me. I'm trying to make a podcast here, Chris.
Scott Benner You couldn't get a little weepy once or twice. What the hell is going on? How about you, Jason? You're an emotional guy. Where's it been?
Scott Benner You know what I mean?
Speaker 3 I about got there.
Scott Benner I would have cried at Yo Yo Ma last night if I said exactly what I was thinking, by the way, like, to my kids. Like, I think that that experience is important. I I don't know if I sound like a high minded white lady right now, but I really mean it. Like, you should go online and find out when that man is coming to your part of the world and put on some nice clothes and treat yourself and go sit down. Don't say a goddamn word.
Scott Benner Don't look at your phone. Stare forward. Watch him hold that bow and watch those noise. I don't even care if you even know the music. Just sit there and watch it.
Scott Benner I think it really would change your life. If I would have started saying that to my kids and how much it meant for me to that they were all together, I would have like I probably would have cried. So anyway, my stoic
Speaker 3 Do regret do you regret not?
Scott Benner Yeah. All the time.
Speaker 3 That like?
Scott Benner All the time. All the time, I regret it. With my son, I do it by hugging him because if I talk to him too much about how I feel, I think it makes him uncomfortable a little bit. So I let him pick it up on his own. He still gets it.
Scott Benner I don't get the catharsis of saying it. So I I get robbed a little bit, but he doesn't get robbed because I know he hears it because I listen to him. He knows like, he said to me he said to my wife last night when we got home, we're so tired. There's nothing like a people with autoimmune diseases trying to go out in the middle of the day. Like, everyone was so exhausted when we got home.
Scott Benner Like, I think everybody's not this tired. But right now, but we're kinda, like, mulling around the kitchen, like, 11:00, we're home. He says, I keep wondering why does dad love this so much. I even think just him wondering that is enough. I did say to him, I said, I don't know how to explain it to you.
Scott Benner And I told him the same thing I told you. Man hits a certain string in a certain way, and I just water flows out of my eyes. Like, I'm just he it strikes me in a in a certain in a way that I I don't really have words for. Exactly. I don't know.
Scott Benner I said it it slows my pulse. It slows my heart rate. It makes me calm. Like, I I don't know what else to say. And and and there's something about watching and that guy's beyond an artist.
Scott Benner I know this is probably, like, pretty obtuse for most people. Like, a single man playing the cello, probably not a thing a lot of people are accustomed to talking about. But he's clearly a renaissance person. Like, he's he this is clearly a gift that he's had since he was a child. Right?
Scott Benner And you watch him he at some points, he's playing. He sat he's only sitting in a chair. Like, I I don't know if you guys ever seen him. Man walks out with a 400 year old cello. He's wearing a suit.
Scott Benner He puts the in the floor, sits down on a what does not look like a particularly comfortable chair, and he disappears into it. Like, there are times when he's playing that I don't even know if he knows we're there. Eyes are closed. He's leaning back. He's the cello's on him.
Scott Benner He's playing it. There's times that he makes it make a sound and you a smile comes over his face. Almost like he's pleased that he hit the note or something like that while playing a thirty minute piece. There's no music in front of him. And I've heard it recorded and played back a million times.
Scott Benner He's playing it perfectly. Like, even that, like, captures me. Like like, how does he how does he do that? And then, you know, talks for thirty seconds then sits back down and plays another thirty minute piece straight through. So it's fascinating.
Scott Benner I think that what I did last night was let my kids watch me watch it and that's enough, if that makes sense.
Speaker 3 Makes perfect sense. I think, Scott, you got a connection to music that I don't think every human has. Like, I think I have that same kind of connection to music that I enjoy and like where, you know, it sends that that tingle up your spine when you hear that particular part of the song. It's it's almost like an indescribable feeling.
Scott Benner Mhmm.
Speaker 3 It just bubbles up and and smacks you right in the brain, in the heart, and everything. So
Scott Benner Feels like the string pulls me forward then pushes me back into, like, a I don't even know how to yeah. There's these two very I I didn't get their names. I'm sorry. These elderly women were sitting next to me last night, and we were talking in the intermission. The one woman said I was talking about how it made me feel, and she had, like, some more ideas.
Scott Benner She goes, are you a musician? I said, I have no skill whatsoever. Couldn't play music to save my life. She goes, what other music do you listen to? And I laughed and because she must have been 70.
Scott Benner You know? And I said, while driving around this week in my car, I mostly listen to Metallica. And she went, what? And the woman with her went, Metallica. You know, it's that rock music.
Scott Benner And she goes, oh, that's noise. And I say, it's not like, to me, it feels just like this. And she's like, I can't she couldn't understand that. But, like, to me, that the guitar and the percussion that goes with it and somehow the voice I think of as as an instrument not as a voice. I'm one of those people I don't know the words to songs.
Scott Benner I know, until I heard other people say this, I didn't know other people felt this way. But to some people, voices and music don't sound like voices. Like, you're not worried about the words. They sound like music.
Speaker 3 Right.
Scott Benner I'm one of those people. I don't know what anybody's saying. I just to me, the voice sounds like another instrument in the in the collection. But if you told me I was gonna be on a desert island for the rest of my life, I would just want Yo Yo Ma playing the cello if I could only take one thing with me. It does all those things for me in a very simple way, and I like that you sit quietly for it.
Scott Benner You don't dance. You don't even nod your head. You just you sit quietly and you experience it. I I don't know. I anyway, I got to show that to my kids, and I think they'll figure out in their own time why that's important to me.
Scott Benner And, hopefully, it'll end up opening something up for them. I don't I don't know. Anyway, Crystal I'm it will. Crystal's like, the cello. Are you kidding me?
Scott Benner Right, Crystal? Have you ever listened to the cello, Crystal?
Crystal No. I'm just listening because I think it's fascinating now. Music touches different people
Scott Benner Yeah.
Crystal In different ways.
Scott Benner Well, I will, I will send you the album you should listen to. Okay?
Speaker 3 And Crystal could probably attest to my ability to pick out music for certain situations, but I have an ability.
Crystal Yeah. He does.
Scott Benner Yeah. To, like,
Crystal lay does.
Scott Benner Like, lay the perfect thing over top of a moment.
Speaker 3 Yep.
Scott Benner Yeah. We don't have time now, but in the I think he did four pieces last night. And in the fourth one, he said, let's let this last piece celebrate life. And I think it's kinda like the last thing he said. And maybe five minutes into it, a woman had a a health issue right off to our left.
Scott Benner And she was a little older and and not for nothing. She was okay when it was over. But, I mean, it got to the point where they had her laid on the floor. He never stopped playing. And when it was all over, my son said, my god.
Scott Benner He's like, this is maybe the most cinematic moment I've ever been involved in in my entire life for real. He goes, I thought that lady was going to die while Yo Yo Ma was playing Bach behind her. And I thought, well, that'd be a great way to go out.
Speaker 3 It would be.
Scott Benner Yeah. Right? How how wonderful would that be? Like, not not the dying part, but if you're gonna go, not a music designer in a movie that picked the song over your death, like, it's it's Yo Yo Ma sitting there playing right behind you while you're passing on and she's fine. When we all left later, she was out front.
Scott Benner They were still kinda tending to her. But I so badly wanted to run up to her and be like, oh my gosh. How great would it have been if you died while that was playing? That would have been such a good story for everybody, you know. Nevertheless, she's okay.
Scott Benner I I I hope she continues to be. It was just very interesting. His response was it's like it felt like somebody engineered this moment because of what was going on, like, and everything. And and so Jason, you're good at that. When do you do this?
Scott Benner For, like, birthdays? And so when do you put the playlist together? What are we talking about here?
Speaker 3 Well, I I did pick out two songs at my dad's funeral. I'm pretty sure the lyrics to those songs definitely made the vast majority of people there cry. They just fit really well with who he is Yeah. And who he was to everybody around him. And then I don't know.
Speaker 3 I just had a really a knack for picking out the right music for that situation.
Scott Benner Nice.
Speaker 3 Especially sad situations.
Scott Benner Yeah. I think about all the time what music do I want playing at my funeral.
Speaker 3 All the time. Yes.
Scott Benner Yeah. Just because you feel like that's the, I don't know, the best way you could possibly, like, transfer to people how you feel about yourself. I also realized that when I think I think about sometimes, like, gosh, if my wife dies before me, will I end up picking music that makes her funeral about me and how I feel about her and not about her? Do other people not think about stuff like this?
Speaker 3 I don't know. I think about it. Do you think about it, Crystal?
Crystal I have never thought about it, but, I mean
Scott Benner Now you are. Now you're like now I gotta like. Crystal, do you know do you live in a a two story or a one story house?
Crystal Single story.
Scott Benner Single story. Do you know how you would get out if there was a fire? Have you thought about it?
Crystal Yes. Because my husband is on the fire department.
Scott Benner So And you know had that. And if that path is blocked, he told you know a different way to get out.
Crystal Yep. We've got multiple.
Scott Benner I don't understand people who haven't thought about that. It freaks me out if you haven't thought about how to get out of your house in case there's a fire.
Speaker 3 Yeah. I have multiple ways out of my house, Scott, if there were to be a fire. I have multiple ways to get to my kids if there happens to be a fire. So Yeah. I have thought about it extensively.
Scott Benner Other some people don't. Some people are like, oh, that won't happen. Or I hadn't thought about it like that. I'm like, I please and I'm not neurotic. I just that seems like one of those things like, I would not wanna be woken up in the middle of the night faced with this dilemma and that be the first time that I considered it.
Scott Benner So
Speaker 3 So when you went to your Yo Yo Ma concert, did you spot the exits when you walked into the auditorium?
Scott Benner I know. I'm not like that, but I know where they're at. I've also been there before, so I know my way around the building and everything like that. It wasn't my first time there.
Speaker 3 Yeah. I always I always spot the exits and pick the ones that not the the herd of people are gonna run towards.
Scott Benner You feel like the the way they won't go? Yeah. Yeah. There's little stuff like that. Like, I I don't know.
Scott Benner Like, I've told this story before, like, but my I brought this up in front of my brother-in-law once. And I was like, you don't know how you'd get out of your house if the first path was blocked? And he's like, no. And I was like, oh. And I just threw me for a loop.
Scott Benner I was like, oh. I said, I have a window out of a secondary bathroom that leads down to a half roof where you could jump pretty safely from. So that would be my next spot. From there, there's another one that would be a farther fall, but it would be this. Like, I think there's a bush I think you could grab.
Scott Benner Like, there's like, all these I'm like, you didn't think of any of that, hon. He's like, no. It's just it's just a different mindset. Like, it's not that he's not a dumb guy or anything like that. He doesn't things don't occur to him that way.
Community Jokes & Ending Wrap-up
Scott Benner Anyway, this has gotten pretty far from you know what we didn't do? I'm so sorry. What's your father's name? Tell everybody.
Speaker 3 Gary.
Scott Benner Gary. Well, will be for him then. We'll we'll we'll leave this here for him. I think I think the things that he worried about ultimately, which are, know, your kids, Jason, sounds like they're in good hands and and doing really well. And so I guess in the end, he didn't need to worry.
Scott Benner It would have been okay.
Speaker 3 It would have been. Yeah. Before we go, I have some requests.
Scott Benner Okay.
Speaker 3 First, I need to know if DexCom follow is down.
Scott Benner You just Jason
Speaker 3 There Oh. Seriously. Was There was a post about it. There's Someone just posted about it.
Scott Benner Did it happen today?
Speaker 3 No. It's not down. It's just down for that one person.
Scott Benner Yes. Yeah. I I Jason would like me to tell the whole world just because your dexcom's not connecting doesn't mean that the entirety of the system is not connecting.
Speaker 3 Yeah. And then I have I had another request from some people. They want you to say macchiato.
Scott Benner Macchiato? What is that? Yeah. Is that a drink?
Speaker 3 They also yeah. They also want you to say water.
Scott Benner Well, listen. I go through this a lot, and I'll tell you something that that's gonna be a problem for the next couple weeks after this. I know that you all say water. Is that right? No.
Scott Benner No? Water?
Speaker 3 Yeah. There you go. Just get closer. You're Water?
Speaker 3 Little too hard there, but you're close.
Scott Benner Water? No. What what I don't really understand what it is you people hear.
Speaker 3 We're not hearing the word water out of your mouth.
Scott Benner What are you hearing?
Speaker 3 Woah. You're you're you're you put like an h in there.
Scott Benner Water? I'm saying water. Yeah. But when I try to say it right, it's water?
Speaker 3 Oh, that's better.
Scott Benner Water is better? Yeah. No. That's ridiculous. That is not right.
Scott Benner I know for sure that's not right, Crystal. It sounds sounds I am when I say the word correctly, I am just doing the impression of what I think you guys want me to say. I don't know. It sounds very false to me what I'm saying. I know by the way, I'm also aware that this isn't the case.
Scott Benner I'll tell you what I'm dealing with right now is that yesterday, the Trump Rx thing came out. And
Crystal Oh, yeah.
Scott Benner No trump r x dot gov, and no one is able to talk about it without it becoming a political conversation.
Crystal Yeah. Mhmm.
Scott Benner So it's this is gonna be for weeks in the group. I'm gonna be dealing with this. And then I Yeah. Well You know?
Speaker 3 By the time this podcast is out, hopefully
Scott Benner That'll be over. Yeah. Yeah. And we'll be on to something else. Like, is Dexcom follow down?
Scott Benner What what are what are the other things that people say over and over again that you're just like,
Speaker 3 Insulin and storage temperature.
Crystal I was gonna say, how do I keep my insulin cold while I'm traveling?
Scott Benner You don't?
Speaker 3 You don't.
Crystal You just take it with you.
Speaker 3 It'll be fine. Yeah. And then airport security. Mhmm. And that one's Just walk
Crystal through like a normal person.
Scott Benner That one really is interesting, isn't it? Because there are times when I know it's the t it's TSA's fault that it goes poorly. And there are times I think people I don't know, like, what happens, but sometimes it feels like it's they wanna be upset. I can't tell exactly. A lot of it's just create Arnd I just flew to a into Boston the other day.
Scott Benner She and I went and did I think I can say this here, but she and I went and did social media for Omnipod. Like, we filmed a bunch of stuff for them. On the way out, like, you know, leaving Newark, she's like, it wasn't bad. Like, was only a step behind me. She's like, they swabbed my hands, swabbed the pod, and it was kind of it.
Scott Benner But on the way back, she walked through. Like, she looked light and airy. She had a big look on her face. I was like, what's up? She goes, like, they don't know I'm wearing an insulin pump.
Scott Benner I went through the thing, and I don't know if it didn't show or not, but I just nobody stopped me. She's like, that's never happened before.
Speaker 3 Yeah. Well, they definitely saw it if she went through the full body scanner. But
Scott Benner I mean, you would think so, but she's never not been stopped. Yeah. So she's like she goes we we get our stuff together and we keep walking. She goes she looks around and she goes, how many other things do people bring through that they shouldn't have brought through? And I was like, oh, it's best not to ask yourself that question.
Scott Benner Yeah.
Speaker 3 She just did her own security audit on TSA there and they fail.
Scott Benner She just learned that the world is held together with, duct tape and bailing wire and that we're all lucky it hasn't spun off its axis. Yeah. Yeah. And she I go watch it on her face. Like, she was first just thrilled that she didn't get stopped, and then immediately was like, are we safe?
Scott Benner And I was like, probably not. You'll be fine. Keep going. Anyway, anything else that the the the people are asking you to do?
Speaker 3 They have a bunch of other words. Most of them are French, so I can't pronounce them.
Scott Benner Mhmm. I don't know why that lady thinks we can all speak French. But but we we definitely can't. Well, guys, I really do appreciate you doing this. I have seven minutes to reset myself and record with Erica.
Speaker 3 So, hello for me and remind her that she saved me from myself.
Scott Benner Absolutely. Well, and for people, the, the five four three two one method was really valuable for you. Right?
Speaker 3 That was invaluable to me. I I don't think I would be in the mental state I am right now without it.
Scott Benner So Awesome. Well, at juiceboxpodcast.com/lists, Find the mental health one. Look for 54321, and then you'll know what Jason knows. Crystal, thank you very much for doing this with me. I really appreciate it.
Scott Benner Was lovely to get to you.
Crystal My pleasure. Thanks for including me. I appreciate it.
Scott Benner This was awesome. It really was. Okay. Hold on one second for me, guys.
Closing & Sponsor details
Scott Benner I'd like to thank the blood glucose meter that my daughter carries, the Kontoor Next Gen blood glucose meter.
Scott Benner Learn more and get started today at contournext.com/juicebox. And don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now and links at juiceboxpodcast.com to Kontoor and all of the sponsors.
Scott Benner I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes twenty four seven. It works around the clock so you can focus on what matters.
Scott Benner The Juice Box community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox.
Scott Benner If this is your first time listening to the Juice Box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. Look for the Juice Box podcast and follow or subscribe. We put out new content every day that you'll enjoy.
Scott Benner Wanna learn more about your diabetes management? Go to juiceboxpodcast.com up in the menu and look for bold beginnings, the diabetes pro tip series, and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Hey. Thanks for listening all the way to the end.
Scott Benner I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box podcast. If you've ever heard a diabetes term and thought, okay. But what does that actually mean?
Scott Benner You need the defining diabetes series from the Juice Box podcast. Defining diabetes takes all those phrases and terms that you don't understand and makes them clear. Quick and easy episodes. Find out what bolus means, basal, insulin sensitivity, and all of the rest. There has to be over 60 episodes of Defining Diabetes.
Scott Benner Check it out now in your audio player or go to juiceboxpodcast.com and go up into the menu. Have a podcast? Want it to sound fantastic? Wrong way recording.com.
