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Living with Diabetes

Why are stories so powerful in diabetes management?

12/29/2018 by Scott Johnson

Why are stories so powerful in diabetes management?

Hi everyone! Hope you had a wonderful Christmas holiday season and thank you for coming back to mySugr for another episode of “Live, with Scott!”

This week, we’re featuring Niketa Calame-Harris, a diabetes advocate, professional actress, producer, and acting coach. She's well known as the voice of Young Nala in Disney’s The Lion King. In our talk with her today, we’ll discuss the power of story and how it shapes people inside and outside of the diabetes community. Hearing the honest and complete stories of people with diabetes can be extremely empowering, whether you have diabetes, know someone with it, or even as a congressional leader. Please join us for a wonderful conversation.

Summary

  • How Niketa discovered she had diabetes, the lack of quality education at first, and her advice on what she’d do today
  • How she got involved in advocacy after meeting others with type one diabetes
  • Her activities with the ADA's Call to Congress
  • How joining a support group can make your life easier
  • Why being transparent with your story is so important
  • Why it’s important to show that love and relationships can and do happen with diabetes
  • Niketa’s yearly show at Rockwell Table and Stage
  • Her inspiring work as co-founder at IV I II Studios
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Transcript

Scott Johnson: Hey, welcome to another episode of "Live, with Scott!" Thanks so much for tuning in. My name is Scott Johnson. I've been living with diabetes since I was five years old and the diabetes social media space, that's you, has been a big part of my well-being for a long, long time. In other words, you are as important to me as the holiday cheer at this time of year. Thanks so much for helping me along.

Scott Johnson: As your host today, I'm thrilled to connect you with Niketa Calame-Harris. Niketa is such an advocate for the power of story and I can't wait for you to hear hers. And, did you know she's the voice of Young Nala in The Lion King, so cool. Right? But before we get too far along, let's announce last week's winners. Congratulations to Pamela Sue Dodd, and Kathy Lawrey who just won some fun mySugr swag. We'll send you a message on Facebook soon after the show to coordinate details. Stick with us to learn how you can win some fun free mySugr swag too.

Scott Johnson: While we get going, please share a quick hello in the comments and let me know where you're watching from. I'd love to say hello. If we cover anything that resonates with you, please show us some love and if you know anyone that might find this helpful, please share this with them. Today's episode is sponsored by the mySugr Bundle. Get unlimited test strips, automatic supply refills, personalized support, and more. All for just $49 every month. Learn more at mySugr.com/facebooklive.

Scott Johnson: Now, more on this week's guest, Niketa Calame-Harris is an award-winning actress most noted for her role as the voice of Young Nala in Disney's 32nd animated feature film, The Lion King. She's a California native. She has her Masters in Fine Arts degree from the Actor's Studio Drama School in New York and her Bachelor of Arts degree from UC Santa Cruz. She is a project ambassador for the American Diabetes Association in Los Angeles and has been a California advocate at four Call to Congress events in Washington DC, which we'll hear more about in a few minutes. Are you ready to meet Niketa? Let's do it.

Scott Johnson: Hi Niketa, thanks so much for joining us today. Happy holidays.

Niketa Calame-Harris: Happy holidays. Merry Christmas.

Scott Johnson: So for those that are not familiar with you and your story, can you tell us a little bit about your connection to diabetes?

Niketa Calame-Harris: Okay. So back in 1999, it was the end of my freshman year in college and I had all the symptoms like I was losing weight and I wasn't doing anything to lose weight. I could drink like a whole box of Capri Sun and still be thirsty. And it's so weird because like when you're in your teens and going into your twenties and stuff, you're kind of not that worried that you're losing weight even though you're dangerously losing weight? But then when I got home for summer, I was starting to feel really bad and I couldn't hold food down and so I was like, okay, I need to go to the doctor. And the nurse, it was so crazy, she was like, "Oh, you're just dehydrated. Drink some Gatorade." No, I think something's really wrong. They did some blood work and I was, of course, in DKA and like, it was coma time almost, like I was in the thousands or something. And um, yeah, and that's when they told me you have type one diabetes and the only thing I knew about diabetes was Steel Magnolias with Julia Roberts and I was like, I'm not going to have kids and I won't be able to act! And he was like, well Holly Berry has type one so I think you'll be fine with your acting career. And then I was pretty much on my own with this condition until 2011. in 2011 I applied for Call to Congress, which is with the ADA where you lobby for like a whole day on the hill and they also have two states represented and that was the first time I met more type ones. Getting involved, kind of like changed my whole life because of the commercials and stuff are type two this, type two that. Um, so it was really an eye-opening experience for me and I've been involved ever since.

Niketa Calame-Harris on Live with Scott

Scott Johnson: Yeah. And that's so great. I mean, I think one of your main messages is about is about the power of opening up and telling your story and bringing other people with diabetes into your world and how much, how much difference that can make both for yourself and for others and also a big believer in the power of story. So that point that you shared just resonates with me. I think that it also, there's so much work that goes on behind the scenes in doing that work in the halls of Congress and all the advocating on behalf of all of us. So thank you for all the time and energy that you spend doing that because it's a lot. It takes a lot. So...

Niketa Calame-Harris: I mean, testimony is really huge. Even when we go to the different senator's offices and a different congressmen, a woman's office, whenever after we say our pitch and what we're asking for, when we ask what is it that we can do for you back home, a lot of them are just like, well actually testimony is the biggest thing that helps us, putting a face to it, versus, so when we're going out, we're not just talking numbers and figures, we can say so and so's story, who lost her daughter to type one before all these CGMs and stuff were in existence. So, yeah, story is pretty powerful.

Scott Johnson: It's super, super powerful. Another one of the inspiring messages that you talk about is finding different ways to stand up and take control of your diabetes and I wanted to find out has that, has that sort of always been the case with you, like from your diagnosis and having to deal with it on your own?

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Niketa Calame-Harris: No, I think I was in denial for a couple of years and I was a teen going into my twenties, so I had all my habits already. I kinda put it on the back burner for a little bit. And then my doctor wasn't really informative, so it wasn't really until grad school where I met a research-based doctor and like a clinical trial situation that I really got ahold of it and was, actually, things were explained to me on why you don't want your blood sugars to go high and what the risks are. Those are not what I had in the beginning years. Um, so I actually have to complications from diabetes. I have gastroparesis, nerve damage in your stomach, so slow digestion and neuropathy in my legs and feet, and I'm pretty sure if I had education and I had the, all the avenues that I'm involved with now, I probably wouldn't even have those. So people who are just diagnosed, I would say get involved and get in support groups and things like that because you learn all kinds of neat tricks of what different people do. Um, and then being a type one adult, that's like a whole different thing, we're worried about totally different things than the kids, babies now and marriage and all that kind of stuff. So meeting some adult type ones now was important to me and my husband.

Scott Johnson: Yeah, absolutely. I think it's really brave of you to mention having complications, but it also is, it's an important point and again, really highlights the power of story, right? Because diabetes, when you encountered that diagnosis of diabetes, uh, you found a way to um, for life to move on, right? Like you found a way to figure out like, okay, I have to deal with this and still deal with everything else going on in my life and I imagined that that's also the case whenever you encountered the complications that you're dealing with. However, we don't see that complications are talked about enough and so I think that it's really powerful that you share that so openly in your story as well.

Niketa Calame-Harris: Yeah, yeah. They kind of mentioned it like, um, when your doctors are like trying to browbeat you about what your numbers are, but I'm hearing different people who actually have it can probably be a little more real or eye-opening for people living with the disease. I think unless you're a doctor himself, I find a lot of people who have doctors who actually have this disease, pay attention or listen a little more figuring out stuff.

Scott Johnson: Absolutely. Would you like to talk a little bit about how you deal with the challenges associated with type one diabetes?

Niketa Calame-Harris: Sure, like I said, support system I feel like with any long-term condition is important. There was a group on facebook called The Ones I'm involved with and there are loads of like groups on facebook, but that's one that I got involved with really early and they meet every now and then and they happen to be adult and then also I'm on the advocacy committee at ADA and a lot of those people have type one and type two diabetes. So just hearing everybody else's story, even something as simple as, um, one lady was saying that they keep their, um, like juice boxes or something by the bed, which I had never done. I always go all the way to the kitchen, you know, everybody get up, lights up. And I was like, oh, I never even thought to like put the juice boxes, they put it in like a little refrigerator by their bed. So little tips of just like survival and stuff I think helps when you have a community surrounding... Even, uh, what do you call it? Like a validation or accountability partner with exercising or anything that's part of your management program, I think help so that you're not doing it alone is the point.

Scott Johnson: Absolutely. It's again that power of perspective, right? Seeing that there are so many different ways to attack the situation is that I'm dealing with and sometimes these little tiny shifts in perspective can make all the difference in the world. It's so powerful, stories...

Niketa Calame-Harris: And also, I mean everyone's different, but I've found being transparent about it has helped me in my situations, even with people who don't really know that much about it and say those comments that make no sense. Like, oh, you're low, take some insulin. Oh, you're high, drink some juice! So kind of informing and educating the people who are in my circle so that I don't get an attitude and so that they can speak with some education around what they're trying to provide me with in terms of being careful around me or watching what I'm doing.

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Scott Johnson: Do you think also that you've been more transparent about your story with diabetes helps them feel a little more comfortable about approaching you with questions?

Niketa Calame-Harris: Yeah. Yeah. I do feel. I do feel like, um, especially in the acting world, I'm a little closer to my acting friends, um, right now and I've found that they have really just been surprised of all that is involved, the rollercoaster of the day to day because it's kind of an internal thing. It's not like some of the other diseases where you can physically see it. Um, and a lot of us, it's just like what we do. So, people are surprised when it's like, oh no, actually I was super low last night and I was up all night and I can't even, I don't feel like doing anything today. Um, so they, they are, they're kind of inspired too, um, some of the people who don't have the condition and uh, one of my friends, because we were talking about it, I actually, I actually diagnosed her. I'm feeling really bad. She was losing weight. She said she was going to go to the doctor and I was like, ask him to take your A1c, ask him this, ask him that. And I was like, can I take your blood sugar right now? And she was like, okay. And it was like 400 and something. So by the time she went to the doctor they had said you have type two diabetes.

Scott Johnson: I'm sure that streamlined and accelerated her path and now she also knows she's got someone that she can approach with questions. I mean that that's so much, She's got such a headstart on the game.

Niketa Calame-Harris: I took her to the TYCOD with me, not this year but the year Ben Vereen was there. So. She really liked that too.

Scott Johnson: I bet. I bet. I bet that made such a big difference. Now earlier you mentioned about how finding those connections is so big for you and your husband. Can you talk a little bit about how your relationship with your husband is affected by diabetes? I think that's something that doesn't get talked about enough.

Niketa Calame-Harris talks relationships & diabetes on mySugr's Live with Scott

Niketa Calame-Harris: He is a-maz-ing! Dating, like I said, I'm like the poster child for transparency. I told him about it and even when on a few hospital trips when we were just dating, so luckily he's one who is really involved in wanting to know everything about, like he was with me at TYCOD and he was at the Call to Congress with me a few, twice, I think one time or twice. He checks my blood sugar sometimes. And that's different for everybody because some, I've met some people who are like, no, I don't know, want my partner to do anything. We're just very, like maybe we're in the honeymoon stage, like all up in each other's business. But yeah, he tries to be very informed and I try to um, let him know what's going on. So like is it a blood sugar attitude, or am I just mad at you, and like all the things that happen in relationships and, and he goes out and he speaks with me too. We just spoke to some kids and parents at Children's Hospital out here in LA and that was powerful for some of the parents with daughters because they felt like they were scared that no one's going to love their daughter or their never going to get married. So we're really trying to push the whole relationships and love with diabetes because it's something. Yeah, like you said, that's not really talked about. Yeah. And some of the parents were asking questions like, "Oh, he's going to college. So do you like unhook when you go to bed?" But yeah, that just don't get talked about.

Scott Johnson: I think it says, it just says so much about him as a person and about the relationship that you have built and are building together. So I'm really, really great and it also, it's a, you never know the ripple effect that the actions that you two are taking together will have in the world. So thanks, Jim, on our behalf for all he's doing!

Niketa Calame-Harris: I was hospitalized in August for two weeks. I was in ICU for a week and then I was in the regular hospital for a week. It actually ended up being just like a pump malfunction, but then the high blood sugars kicked off my gastroparesis. That was one of the times I had a meltdown moment. Like you probably didn't think for better or for worse was going to be like three years into the relationship. Usually for better, for worse, you're thinking like Oh, 30 years down the line I might have to take care of them, so it was a little scary situation for us, but he was like, no, you know the vows are from the minute you make them till death do you part. So I'm not going anywhere, basically!

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Scott Johnson: Just in seeing pictures of each of the two together. And then even though we didn't get a chance to talk or speak much at... he just, he looks like a very, just that kind of person that, that doesn't surprise me, that, that he would respond that way and... to spend more time with him and get to know him a little bit better. I think it's an inspiration to many of us around and I likewise wouldn't be who I am as a person or a person with diabetes without the strong support of my wife behind me. So in the end, in front of me and all around me. Right? Like every which way. Yeah, we will often need to help and it shows a lot of the strength of our character to open up and let our partners and loved ones help us. And I think that it's an evolution in the relationship both with them and with our diabetes and everything around it.

Niketa Calame-Harris: Definitely.

Scott Johnson: Can you talk a little bit about, um, you know, so we've talked about the relationship with our loved ones. And how about the relationship with your career as an actress? I mean there's no, no routine, there's high-pressure situations, long shoots. I mean, I can't, I can't even imagine how...

Niketa Calame-Harris: Well it's definitely been a lot easier now that I'm on pump therapy. I've only had a pump for about three years. So before then, it was a little hectic. It's way easier now with a pump. Yeah. Your schedule is all over the place. It's not like nine to five day in, day out, repetitive, I know what's happening kind of situation. I could get a call the night before or something tomorrow, so I have to kind of like, in the moment, figure out my whole snacking and, and hope, making sure that there's going to be crap to eat on set and making sure I bring my own just in case, I mean on union shoots there mostly is, but you know, bring your own stuff just in case. And then there was one time I was doing a production of The Color Purple and it was right before a scene that was going to be a lot of dancing and just high energy and I felt my sugar dropping and I didn't have anything but there was a refrigerator and I just looked at it and I like, I don't know, so I don't know whose it was, but I grabbed somebody juice and drank, like the whole thing because I didn't worry if it was going to go to two or three cause I was about to be dancing, I'll get you another one. But that was the only time I had like a scary moment performance and performance time. But luckily I haven't had too many situations.

Niketa Calame-Harris on Live with Scott

Scott Johnson: That's great. That's great. I think there's a certain part of our minds that sort of automatically starts to process like, all right, what do I need to get ready, how do I deal with this and that. And it, it almost proactively sets you up for success once you start to get the routine of the routine of no routine, right? Like contingency plans and, and find a way to deal with it. So that's great. Um, and it, it almost, now that you look back on it, you can laugh about stealing someone's juice... Earlier you mentioned that the, uh, the work that you're doing with the American Diabetes Association and the Call to Congress, can we spend a moment or two kind of diving into that a little bit more? What's that all about? And, and you travel to the hill and advocate and lobby?

Niketa Calame-Harris: So it used to be biannually, but I think they do it every year now with the current administration. But it's a day of training and we talk about all the different, um, the school year asks that the CDC and NIH and all those people, um, at least keeping the amount that they have so far. I'm going to those organizations, but of course, asking for more, and then we'd take a lot of time talking about preparing your testimony. So you go in groups. California is usually the biggest group. Um, and then we talk about who's going to talk about the ask, who's going to tell their testimony related to an ask, who's going to ask the question of joining, say, like joining the diabetes caucus and things like that, that we have privy knowledge if they're on it or not. And I usually start with, do you have someone in your family or are you affected by diabetes?

Niketa Calame-Harris: And more times than not, even if they don't have it, they know somebody really close who has it. So it really is pressing the point of it's like an epidemic, like, one out of two I think they say in a couple of years? Um, so really hone down on the testimonies, getting those tight and then yeah, the next day we're on the hill from eight in the morning to like five in the afternoon. We break off into different congressmen and congresswomen and then for the senators like the whole group's together. So it's like this big round table discussion with their health rep. so that's always fun. Um, we go around and introduce ourselves and say where we're from a few testimonies, and this time we had scientists with us, which was a cool aspect to add to just as living with it, because they can talk about the effects of not having funding and... has even caused some young scientists to want to go overseas and, and practice. They're like, we're losing our research people because not enough money is being put into management and research and innovative things with the healthcare system also had NFL players this time too. That's always fun for us and for the congresspeople if it's like one of their favorites or something.

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Scott Johnson: Yeah, for sure. For sure. There's, I mean, it clearly sounds like there's a lot of homework and preparation that goes into it, the travel and all of that. So again, thank you for the time and energy. I mean, I know it's something that is near and dear to your heart and it sounds to me like you enjoy it very much. But it also like thank you for the time and energy we put into it. It means a lot to us that you're doing that. Um, so you had a show at the Rockwell Table & Stage on Thursday. This is something that you guys do every year. Tell us about it.

Niketa Calame-Harris: Well, the musical director, how we got together, the musical director, when you're doing shows, sometimes you're paired off with one or two of the cast members and you kind of click and form a family and then like, even when the show is, you're still friends, um, it doesn't usually happen with the whole cast, but there's usually one or two people. So the um, so the choir is compromised, is comprised of all the people he clicked with and all the different shows he's been in his time in LA over the years, 30, 30 of us all like individual performers in our own right coming together. So the energy is like off the roof and we've been doing it at Rockwell Table and Stages, which is like a dinner and a show type of place. So we usually do Christmas shows and Easter shows. We were doing it like once a month, but then that got too much with because everybody is a performer and people who were in all that kind of stuff. So we just do a Christmas show and um, sometimes an Easter show. So it's really, it's really big because we have all that time to advertise and everything, so it's usually a packed full house and it's good fun singing with friends and we've gotten to work together professionally to out as choir. So we just, we have an Old Navy commercial running right now and we did like a Lifetime film together where were the choir singing and recording and stuff. Um, yeah.

Scott Johnson: Awesome. Cool. I can, I can picture the energy just off the charts and congratulations on another successful year of that. Another thing that you mentioned, and I would love to hear a little bit more about this, is that the co-founder of IV I II studios, it sounds like an amazing company doing important work and tell us a little bit more about that.

Niketa Calame-Harris: Oh yes. It's an impact documentary company. We work on feature films and we also work on short, short films surrounded around entrepreneurs, solopreneurs, people who are making an impact in their communities and in the world who have a mission that kind of reflects the mission that we're, we're trying to do. Just change the world one impact at a time. So right now we're working on a feature film called Safe to Fight and it's about this. We're following around this lady who has an organization called Boxing for Christ, she was a preacher kid, kind of gone, rebellious and kind of went into drugs and selling drugs and all this kind of stuff, and her kids started following her footsteps and one of her friends was actually up for about to serve life in jail and she made a promise to God as she said, if you get him out of this, I will dedicate my life to keeping kids off the street. Long story short, he only served two years and she's been doing this Boxing for Christ program ever since. And from getting diagnosed with cancer too, you know, a church stealing money from her. Um, she's a go-getter and she's, she's, she's a really special lady. So we're excited to be telling her story.

Scott Johnson: Once again, goes to illustrate the power of story. Which is a reoccurring theme with a powerful person such as yourself. So Niketa, we have covered a lot of ground again today. Um, is there anything that I haven't asked about that you want to share or anything that you want to spend a little more time on?

Niketa Calame-Harris: Probably just like me and my husband. If you have any opportunities where you want to talk more about that love and diabetes situation. I found that it's been an important one just as I go out and talk and sometimes even if he's not talking with me and he's there, I can see like parents' eyes light up when he's introduced afterward. I think it's a real fear that some parents have, um, when their child is diagnosed with, with a long, long term condition.

Scott Johnson: It makes so much sense to me and I can picture it in my head. Just seeing the sense of relief and comfort and knowing that as you and I both know that there's a full and happy life with diabetes out there and one of the things that we need to learn to manage and live with and there are people out there for us.

Niketa Calame-Harris: And also if people have questions, my Instagram handle is at @NiketaCalame, I found people have DM'd about different things and I've been able to give resources or whatever resources that I know I can give them.

Scott Johnson: And we'll put all your contact information, the Instagram and so forth on the website and in the comments of the video so that people can get to you and follow all the fantastic work you're doing and stay in touch so, with that, thank you so much for sharing your time with us today. It's been a pleasure.

Scott Johnson: All right. And there you have it. I hope you also enjoyed getting to know Niketa and all of her great work and energy. And don't forget anytime that you, your family, your loved one or anyone in your circle enjoys Disney's The Lion King, remember that you have a slice of a powerful, powerful diabetes advocate in that story as the voice of Young Nala. As always, please reach out if you'd like any more information on anything we covered. And as a special thanks to all of you watching, I have a couple of special mySugr tote bags with some goodies inside, like a few pop sockets and a few stickers that I'd like to give away. To enter. Leave a comment below, let me and Niketa know if you enjoyed today's episode. And before next week's show, I'll randomly pick a couple of lucky winners and announce them during the start of next week's broadcast.

Scott Johnson: Once again, today's episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more. All for just $49 every month. Learn more at mySugr.com/facebooklive. Be sure to tune in next week for another fun-filled episode with comedian Patrick Ciervo where we'll learn about diabetes and cerebral palsy, his current shows and appearances, and the hilarious "Guess My Blood Sugar" projects he's doing. Thank you so much for joining today. Please like this video. Share it with your friends. Have another amazing day. Enjoy any remaining holiday time you might have off and we will see you next week.

Scott Johnson

Almost famous for being a Diet Coke fanatic, Scott is the Patient Success Manager, North America for mySugr and has lived well with diabetes for over forty years. He's an active pioneer in the diabetes social media space and along with his work at mySugr, he manages his award-winning blog, scottsdiabetes.com when time allows.

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