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Diabetes Connections | Type 1 Diabetes
She Turned Her Glucose Data Into Art. Could it Change How People See Diabetes?
00:27:18
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- [00:05]
A
This week on Diabetes Connections, one of the most unique projects around diabetes that I've seen. What if your glucose graph became a tangible piece of art? Something printed out and put on your water bottle or the back of your laptop or even displayed in 3D. I've seen this in person and it makes a big impact. I'm talking to Krista Scheneman about making this type of art. Her journey with type 2 and it has been a journey. She took a record breaking 28 day walk after her diagnosis, why she thinks it's helpful to look at data in a new way and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Welcome to another week of Diabetes Connections. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Sims. And you know, every year I debate putting out new episodes this close to Christmas and New Year's. And by the way, Happy Hanukkah just passed. You know, all the holidays happening this month. But then I always put out episodes because there's always good stuff to talk about. So hopefully this episode finds you whether you are driving to celebrations or maybe you're driving to work, maybe you're wrapping presents or sneaking away from your family for a few minutes, or maybe maybe you're listening while doing a middle of the night sight change. However you found us, whoever you're listening, I'm glad you're here. But I do have an embarrassing admission about this interview. We did it in June of 2024. Yeah, this was at the DData conference, which happened the day before the ADA Scientific Sessions conference in Florida in the summer of 2024. And I was going to air it back then as part of that year long Type 2 Diabetes Connections podcast I was doing at the time. And, and as I think about it, I probably will put this episode into that feed because people continue to find and really like that podcast, which is pretty cool. But I thought I lost this interview. There are two interviews that I thought were gone forever. This one and one coming soon from Orange Biomed. But I did find them, luckily, you know, thankful for backups, even if I put them in sneaky places that I couldn't even find. Have you ever done that? You put something you just don't want to lose in a very special place and then you can't remember where you put it? Yeah, that's what I did with these interviews. I have actually lost touch with Krista. I did reach out a couple of weeks ago to tell her that I found the interview and I was airing the episode, but I haven't heard back. So if you do know Christa Shenanman, please tell her this interview is finally airing and I would love to get an update on what she's doing now. I am sharing this because what she has to say is still very, very relevant. And she may be the first certified pedestrian that I have ever interviewed. Here's my conversation with artist Krista Shenneman. Krista, welcome. It's good to talk to you again. It's been a while. Thanks for coming on the show.
- [02:55]
B
Yeah, I think we met in June at Dee Data.
- [02:57]
A
Yeah. So let me start right there. Tell me again, what were you doing at Dee Data? Because you are very different than most of the folks that were attending that conference. So tell our listeners what you were involved in.
- [03:10]
B
Absolutely. I'm a type 2 diabetic and an artist, and I. I do a lot of work around what it looks like to be diabetic in this space that, like, maybe doesn't recognize what your body is going through. A little bit of, like, internal versus external landscape looking. And so I received an email from the D Data coordinator and she was like, hey, you're doing some work. I want to, you know, kind of like, feel you out and see if you're interested in this opportunity. And I was like, I'm so glad you emailed. I'm going to do this weird thing. So at D Data, I brought my Cricut. Like, I flew it from Michigan to Florida, like, my Cricut machine, the vinyl cutter, and I printed people's real time glucose right there on vinyl for them to stick on water bottles or laptops or phones kind of wherever they wanted. I'm interested in bringing that data to life, to the real world.
- [04:07]
A
Yeah, it's hard on an audio podcast, but basically what you printed, you've said it, and I'm sure most of you listening have figured this out. The graph, like the little mountain ranch. What is it like when you do that for people? What was their reaction?
- [04:21]
B
This is my first event doing it with other people. I have been printing my own, like, 24 hour, like, landscape graph and kind of like throwing it around for about a year. And it doesn't mean anything. Right. When you're wearing someone else's glucose. Right. Like, it's strange. It's weird to have it out there. Or it was for me. And so this is my first event and I told my partner who came with me, and she does the vector drawing. For me, I was like, you know, we're going to have a good time. It's going to be one or two stickers. It's not even going to be a big thing. We have never moved so fast in our lives for this event. Like I think we printed 50 or 60 stickers in like under an hour. Like it was crazy. I have never had a feeling of just like something when you walk into something you don't think it's a big deal and then people just rush to you and they're like, we didn't even know we needed this and it was just life changing, like altering. And it really drove me to continue this work that I was already doing and kind of playing around with and allowed me to see that it like was important to people.
- [05:27]
A
It was really interesting. I was there. Obviously I don't have diabetes, I don't live with diabetes. So I, I didn't like push my way to the front of the line to get my straight line done. I mean, whatever. And I should say before we go on, Krista, it was really hot. So kudos to you.
- [05:41]
B
Oh my gosh, it was brutal.
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A
Brutal. So you guys did an amazing job in that.
- [05:46]
B
Yes. Yeah.
- [05:48]
A
But that's not exactly what we're talking about. Just wanted to mention it but I think visualizing it is one thing because you people get to see that on their phones. I've been looking at my son's Dexcom numbers, I don't know for 10 years now. Right. But visualizing it in a way that I don't know if it's like non medical or non traditional. Almost, almost fun, kind of affirming. I don't know. When you're putting stickers on water bottles, it really flipped. It was that kind of how you reacted to it initially? Did you find other people talking about.
- [06:19]
B
It in that way? Ultimately this project came about. I was interested in selling my medical data in a very strange way. Medical data is wild, right? The whole laws and things like that around that. And as a Dexcom wearer we are constantly looking at our own medical data. And so this was fascinating to me that I was like getting real time alerts and just seeing it like develop. Right. Like you get alert I think every five minutes or like a, a ping on the, or like a dot on the graph. And it just really resonated like I with me to see this and I really wanted to see it away from the graph. Like what does it mean when I took this line that like is very important to my everyday living away from like, the connotations that, like, I was always seeing it with. What if I, like, separated the two, which is where we started with the landscapes, and then I do a lot of traveling. And so I landed in, like, the world of national parks, where they have those giant wrap stickers. And I was like, hey, these two things look alike. And I did a lot of thinking on the walk, which we'll talk about a little bit later, and I was like, this is it. I want to print these things. I want to do weird things, layering them. I made that giant wooden sculpture of the 28 days where they kind of butted up against each other. I wanted it to live in the world without those medical connotations so that I could be proud of the thing my body did.
- [07:47]
A
Wow.
- [07:47]
B
Yeah.
- [07:48]
A
I had a question all teed up, but you just made me stop right there.
- [07:53]
B
Sorry.
- [07:53]
A
No. Yeah. Hearing someone with diabetes say, so I could be proud of what my body did. We don't hear that. Usually it's, I can be proud of the actions I took or the technology I'm wearing. I rarely don't have a question, but. So let me feel on that for a second. What does that mean? What are you proud of? And I'll be like, devil's advocate and come in here and say, well, you have a chronic condition. Why are you proud of that? Because it's not working correctly.
- [08:20]
B
Correct? Yeah. So, like, I have to think a lot about. I'm a type 2 diabetic. If I'm looking at the medical sense, I'm a younger type 2 diabetic. And a lot of that shame is, like, kind of layered in there. Right? Type 2 and Type 1 are looked at very differently, and they're talked about very different. They're very different. And I lived with a lot of shame for the first, like, half right. Of the diabetic journey for me and what it looked like to be, I guess, told at every instance that I told, like, I would come up to people and be like, oh, I'm type two. Like, telling them that I can or cannot partake in something. Right? And they'd be like, oh, that's a shame you did that to yourself. Or, oh, you're not as big as I thought a type 2 would be. Or if you just took cinnamon or, you know, like, there are these things that people kept repeating to me, and I just felt like, like, damn, like, okay. But like, that's not. Like, I live in a family that has prolific diabetes on both sides. This is something that I knew was happening and it did. And. And I'm making the best of it. And, like, we can't always make the best decisions. And I want to be proud of the life that I live, and this is the body that I get, and I want to be proud of it. It is doing weird things. And that's okay. Like, I'm not saying, like, yay, I'm happy about the. The cards that were dealt. Right. But, like, I need to be okay with how my body has been able to carry me to this point and just, like, do the things that I been able to do and happy for those things.
- [10:00]
A
Which is a perfect segue into the question I was going to move to, which is all about the walk. You mentioned the walk. This was not just walk. Why don't you explain what. What you did and why you did it.
- [10:11]
B
Yeah. Oh, man. This was long. Okay. It has been some years. I should have looked at the date, but did not. Um, I think it's been three or four years now. I walked from Cincinnati, Ohio, to Memphis, Tennessee, in April. I think it was 2022. I think it averaged about 35ish miles a day and was like something like 50 plus 500 plus miles total. I think 470 was like the Google Maps version. I got a lot of lost and a lot of crazy in there. So we added a lot of miles. Yeah. And I was interested in where I grew up, which was Memphis, Tennessee, and where I had, at the time, chosen a home, which was Cincinnati, Ohio, and what it looked like to come back home as a different person, both physically and mentally. I left home not being diabetic and kind of aimless in my, like, early 20s and came back. I had just graduated with my Bachelor's of Fine Arts. I was now a diabetic. I was accepted into the University of Michigan grad program. At the time, things had kind of, for me, like, solidified in my life. And I was in a point where I felt okay with the journey that I had taken to get here. And I wanted to. To really think about home. Right. And the way in which it carries with us for the rest of our lives. So I slowly walked home and thought a lot about it.
- [11:43]
A
One of the things I hear from doing the Type 2 podcast for the past year, and I thought this really only happened with type 1 people being told, you can't do that. You shouldn't do that. Your body won't make it. Your body won't hold up. And I know that that was part of the conversation you'd had with some People, before this walk, did people really tell you that you couldn't not like, walking's not hard and you were walking long distances. People really tell you that this is a bad idea?
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B
Oh, yeah. Okay, so we'll start with just like safety and then we'll go into like, doctor stuff.
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A
Okay.
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B
So this was part of a, A grant that I wrote. It started with me joking with my dad. I was like, ah, I'm just gonna walk home. And he was like, oh, you can't do that. And I was like, bet. Like, no, I think I can. So we joked about it for a little while, and then I kind of really thought about it and then I started writing the Sprint proposal. I submitted the preliminary stuff and they were like, it's too risky. We're not going to fund this. And I was like, bet. So I became a certified pedestrian.
- [12:47]
A
Wait, wait, wait. What is a certified pedestrian?
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B
It is, it is a very, very fast class online that you can actually get like this certificate from. I think it's the highway authority. It's typically for like older people who are no longer driving. Oh, I see. It literally is just, here's how you cross a road. Here's the laws that like, you know, the road has and the or the walker has and the driver you have and, you know, those kinds of things. And I then went one step further and learned about the difference between like walking on a highway and an interstate and the laws and things that go into that, and submitted a whole nother paper that included these things. And they were like, oh, I think you're serious. And then they gave me the money, which was great. And then I was training, you know, for a while and I noticed that like, you know, my body was saying no while I was at the gym. So like, walking for six to eight hours a day is pretty taxing. And I was like, wow, I don't feel good. And so. And like, you know, too much of a good thing, right? Exercise. So I go to the doctor, I'm like, hey, something is happening. What can I do? She tells me, hey, it's probably best for you to wear the Dexcom. And I really don't think that you're going to be able to walk that long and still maintain like a healthy glucose level with the food that you would have to eat. Cuz we were talking about gas station food and like restaurants and things, like things that like, you just could not control, right? And I was like, I think I'm gonna train myself a little bit longer and then I'll figure that out essentially, I think the last six months was me making sure like kind of getting my body ready to like eat strange like things in packets and hot dogs or you know, like just weird gas station food that you, you know, really shouldn't eat on a daily basis, much less like walk eight hours on. Right. Which you know, at the beginning of the walk I always tell people I could not eat enough. Like my glucose was so low all the time. Like I could just could not consume enough calories. In the middle my body was like, we can do whatever we want. Like I was like eating whatever I wanted and we could walk and it was fine. And at the end my body got used to it and it was like, you cannot eat anything. Like do not put any like. And then my glucose was just so high.
- [15:15]
A
Yeah.
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B
I even stopped in the middle of the walk and came home and made sure like I did some blood tests and things like that with my doctor just to make sure that, that everything was okay. And she didn't say no, but she, you know, like wasn't enthusiastic about continuing. And I, I have to look at it as like, this is not something I'm doing every day for the rest of my life. It was a short term thing that was not gonna cause long term damage. Right. In the end, right. So I got a lot of no's but in the end I safety, right. Like having that Dexcom, having the knowledge of where to walk, when to walk, knowing what your body can actually do, trusting yourself. Right.
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A
That's a lot of time to think. Do you remember when you got the idea to just do this?
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B
Yeah, it was at Thanksgiving. Yeah. I had gone home or like my parents live outside of Memphis now, but I had gone home. And like my dad or my mom had mentioned that they wanted me home more. And I was like I said something that I was like very busy or whatever and they were like, oh, you're always busy. And I was like, well like something turned into like, like a snarky comment, right. Of like I'll just walk home and something about like time. And I don't remember exactly, but it was just sitting at the table and my parents just making a very common parental ask to just please come home more often. You have left and we want you to just visit a little bit more, you know, like you know, just being a 20 year old and being, you know, just.
- [16:47]
A
I have one of those, by the way.
- [16:49]
B
Yeah, I was going to say. Yeah. So it was a little, you know, little snarky comment. And the more I thought about It. The more I was interested in including people in that journey, which, you know, led me to sharing my glucose and then in the end, led me to, like, actually sharing the visualization of it.
- [17:09]
A
I see. So looking back, that's just a long way to walk. Would you do it again, do you think? I mean, do you think you got out of it what you wanted?
- [17:17]
B
Um. You know, I went into it thinking I was going to have all of this extra time for whatever reason. I don't know why I thought that, but it was a lot of crying on the side of a highway. Like, it was. I think I'm good on walking. I come from a family of, like, people who walk long distances. My brother had done the Appalachian Trail. I have a cousin that walked across the United States. Yeah, my. My dad has always taken us backpacking, so, like, this is not out of the realm of, like, my family scene. I think I'm okay for now. It was really painful and I. I think I hadn't thought a lot about what it meant to grow up in a place and carry that with you and then have this huge life change about to happen, which is I was uprooting from Cincinnati, moving to Michigan and starting school again and doing all this stuff. So walking might not happen in the future. But also, you can't ever say no. I don't. I don't know.
- [18:13]
A
Yeah. Yeah, no, that makes sense.
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B
It was. It was such a rough time.
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A
Wow.
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B
Yeah.
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A
Since D Data, you've gone to a couple other conferences. You had said you do weird stuff at conferences. So what other stuff are you doing at these events?
- [18:27]
B
So I'm still printing out other people's glucose stickers now. So I am continuing to travel with my silly giant Cricut machine. And I am going to be at, I think a couple Ann Arbor public libraries coming up soon, which I'm very excited about. Out and having people drop in their landscape glucose images and then you print them on the spot. I really have been partnering with the Caswell Diabetes Institute here in Ann Arbor, which I'm very excited about. And I've been part of their very medical conference that just happened. And I'm excited about doing more of a, like 5050 medical and like, general public conference conference coming up.
- [19:10]
A
Yeah, well, and that's interesting because I don't go to many medical conferences. Most of the events and conferences I go to are very community oriented. But when you get yourself around researchers and researchers and. And healthcare providers who are listening, we mean this in the best way. But this is a very different Crowd they have, they're looking for information. They're taking the information in very differently. Um, what do they make of you?
- [19:33]
B
Oh, okay. So this has been the man, I'm calling it, like infiltrating the system. Because I feel like I come off like kind of disarming. Like I'm like a green haired girl that like they're like, what is this thing here? And I'm like, hi, I'm an artist. And like they're like, that's cute. You know, very good. And then they continue to talk about their medical things. And I'm most interested in getting out of this is showing them that there are people to the data that they are talking about. People who not only like can understand the things that they're saying. People who are running in the same circles that they are. Like, I'm in the university with them. And in addition, like people who are able to take their very scientific presentations and very boring explanations of things and make it kind of like digestible and easy for others to understand. Because we need that. You can't run around and give someone a scientific poster and expect them to understand what is being said in this, you know, like very cut and dry language and words that are not used outside of academic language or scientific language or something like that. Like, it's just not, it's a terrible ask and also very boring. So we, we really need some, they really need help.
- [20:52]
A
Well, what's. It's really interesting because I was a TV health reporter at the beginning of my career and I always felt like I was basically just a translator. You know, here's a doctor or a researcher saying something and I just wanted to help everybody understand it. Usually I had to understand it first, right? I had to break it down. And then with the podcast, I'm often doing the same thing. I used to do a game show all about diabetes. And I think that's a different language as well. And I think what you are doing is really just another way of. I mean it in a lot more than this. I'm not trying to boil it down to one sentence, please forgive me. I'm just thinking it's just another way to get this message to people who may accept it in a different way. Right. Like if you're a visual person, if you're an audio person, like there's all these different ways to get these messages to you. And the creativity of the art can speak to these numbers in a way that I think those research posters can't or may speak to different groups of people. So I don't know, I don't have a question. But I was just. As you were saying that I was like, oh my gosh, that's perfect. That makes a lot of sense.
- [21:50]
B
Yeah. My landscapes, like these landscapes that I'm printing out, the landscapes that I keep CNC cutting and like stacking together, they mean something to me. Right. I can see that. And I can remember like, oh man, that was a bad day. Or oh man, that was like kind of rough. And another diabetic can read this and see the same thing without those numbers. And that is so powerful. And then I have researchers come up to me who only look at the data and they're like, I don't understand what you're trying to tell me. Yeah. And I'm like, oh no. Like there's something that's missing within the research and I think it's the human. Yeah, like it's, it's the person who's using the data.
- [22:31]
A
On that note, and I hesitate to ask, but I, I'm a little nervous about the answer, but I'm going to ask anyway. You live with type 2, you're in spaces a lot with people who have type 1D data. You know, it's for everybody. But the majority of people there live with Type one. How is that? Do you feel like you're treated okay? I mean, like I said, I almost hate to ask but like there's this horrible bias and I think most of the, like, I hope the circles I run in are okay. And we, we like to think it's all, all good. Would you mind sharing a little bit about that?
- [22:59]
B
Yeah. I think with any person we can only look at the things that our body and our, and we've been through. Right. And we can make exemptions and you know, like try to understand and be empathetic to the other person. I think sometimes it's the mark is missed and I think that's across the board even with the most well intentioned people. Right. And on the other flip side of that, we all have to remember that like we're all doing very different things. We're caring for our bodies, which look like to researchers the same way. But it's not like all of our decisions and things like that. I find myself in almost exclusively type one kind of communities, which is really interesting. A lot of the academic groups that I attend, they're actually called like type one research people. They're type one. They don't actually even talk about type two stuff. And I want to be the human that like Allows them to understand that both lives are interrupted just at different paces and different times, and everyone's making different decisions. I'm not looking at it as, like, being slighted. Right. Like, I feel like there are totally people who are like, this is the good diabetic and this is the bad diabetic. Right. We have those things. I want to be part of these spaces, and I think to be part of these spaces, I have to be the person that, like, looks past the two different ones and still understands that we're both trying to. The end goal is to, like, show people that this stuff is serious and we need more representation either way.
- [24:39]
A
Before I let you go, I'm just curious about this, and this might sound really stupid. We talked about the stickers, but the artwork that you had was layered. You know, the wooden sculpture.
- [24:48]
B
Yeah.
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A
Do you add to that? Is it static? Do you change it?
- [24:52]
B
Okay, this is going to be a little bit of a spoiler. I am working with a very good friend in fabricator, and we are hoping to do a 365 wall installation, like, so vertically. So it's, like, in proposal mode. So that was actually. And it always kind of has been a prototype, and so people were like, oh, this is great. And I was like, yes, love it. So that I can get more funding.
- [25:19]
A
Yeah, that's great. Yeah.
- [25:21]
B
So I've been shipping it. It's been just three different locations now, which is great. And it actually has always been just like this tinier version, which, by the way, it's like 5ft by 4ft, so not very tiny prototype of a very big wall that is going to be, like, permanent. And I think. I think it's going to be 10ft by 15. Something like, it's. Yeah, it's going to be quite. Quite sizable.
- [25:45]
A
Awesome. Oh, I'm so glad I asked. Well, keep us posted.
- [25:49]
B
Yeah, I'm excited.
- [25:50]
A
Krista, thank you so much for joining me. I'm thrilled to talk to you. It's not quite as warm as the first time that we met, thankfully.
- [25:57]
B
That was brutal today.
- [25:58]
A
Oh, where are you? Where. You're in Michigan.
- [26:01]
B
I'm. Yeah, I'm in Michigan. So it literally. It was our first snow today.
- [26:04]
A
Oh, yeah. No, I'm in Charlotte, North Carolina. We're. We do not. I don't want to see any snow.
- [26:09]
B
Yeah, yeah, that's fair.
- [26:11]
A
Thanks so much for joining me.
- [26:13]
B
Thanks so much for having me.
- [26:19]
A
I'm going to link up some information and social links from Krista in the show notes. As I said, I really couldn't get in touch with her. So if you know her, tell her I've messaged her and I, you know, I would just love an update. And I hope she's still making art like this. I think it's absolutely amazing. As this episode goes live, it's just two days before Christmas, so I hope you have a very safe and happy holiday. However you celebrate, we do plan to be back next week and then barreling full steam ahead into 2026. Thanks to my editor, John Buchenis from Audio Editing Solutions, and thank you so much for listening. I'm Stacey Sims, and this time of year especially, be kind to yourself.
- [27:04]
B
Diabetes Connections is a production of Stacy Sims Media. All rights reserved. All wrongs avenged.