Beta Cell #015: Deanna Paolantonio Transcript

Full Episode

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.


[music]

Craig: This is Beta Cell, a show about people living with type 1 diabetes. I'm Craig Stubing.

[music].

Deanna was always an active person. She started dancing when she was four years old, and as she got older she competed internationally. After graduating from a performing arts high school, she earned her Minor’s and Master's degrees in Dance at York University in Toronto. She was 25 years old, where she picks up her story from here.

Deanna: I had finished my Master’s in dance and was like, I'm feeling so good. I applied to the Ph.D. program because I had been nominated by some of my professors to continue my research and continue my work in the dance department. I was feeling pretty damn good. Aside from all those telltale symptoms that I didn't realize what they were at the time with being super thirsty all the time and ready to pass out when I would just sit down and stop doing something for a second.

Craig: Were those symptoms affecting your dance?

Deanna: They were. Outside of dance, I'm also a fitness instructor. I'm superphysical and had taken on a few extra classes here and there. I was training for a Tough Mudder competition. It made it difficult because I was tired. I noticed, especially in the gym, if I was trying to train that my muscles just weren't responding the way that they normally would. I mean it made sense in my head that I'd be super thirsty because I'm working out so hard, but it didn't the amount that I was drinking and that it was like an urgency. I was so thirsty. That should have probably triggered me sooner than it did to go to a doctor now, that I think about it.

Craig: How long do you think you had these symptoms?

Deanna: I would guess it was a good four or five months before I actually went to the doctor. I actually went to the doctor thinking that I'm drinking so much water, I can't stop going to the washroom. I must have a bladder infection or a virus or something like that. When they did it, it was a walk-in clinic, the day before Good Friday, they had me do blood work. The next morning, so good Friday, I got a phone call on my cell at 7:30, and they left a voicemail saying, "You have diabetes, go to the emergency room."

Craig: What was your reaction when you heard that voicemail?

Deanna: I mean, that was the last thing that I was expecting and it was panic more than anything. I need to do what they told me to do. I need to get to the emergency room as fast I can, and I did. Canadian healthcare, I know works a bit differently than American healthcare. Basically, they set me up with a clinic. I like to call it a conveyor belt. You'd make your appointment, you'd go in, you'd see a nurse, and then they'd pop you up the other side, and the next time you'd come in, you'd go through the line again, but you'd see a different nurse and then come out the other side.

There's very much this weird feeling that I think was this and still is, some day's the scariest part of diabetes is that it's now your responsibility to be in control of your blood sugar. I am not a pancreas. I can never be as perfect as my pancreas was for that purpose, but it's my responsibility. How am I going to be as controlled as I possibly can. If anything in the last two years, I have learned that diabetes is not just about consistency in regards to how I take care of myself, but it's also consistency in regards to what kinds of advice I'm getting and who I'm dealing with, which then really led me on a search for anyone who I thought would be able to deal with someone like myself because many people are not used to thinking of diabetics as active people and are not used to dealing with people who like to be as active as I am.

I needed to find someone who could do that. That led me to a friend of actually my boss at the gym who is a type 1, and he's a fitness instructor. I just called him and said, "Where do you go? Where's your nurse? Set me up because if you're able to work out and do all the things you want to do, those are the things I want. I need that person in my life." Since that time, I've been with the same clinic and the same nurse. She is someone who firmly believes that diabetes should not dictate what you do or don't do. We have to be more prepared for it. We have to plan for those types of things. It shouldn't stop you as long as you're safe. She helped me to do that.

Craig: People who don't have type 1 don't realize how individual the disease is.

Deanna: No.

Craig: My type 1 is a lot different than your type 1, than someone else's type 1. Knowing someone who understands the specific way your body works makes a huge difference.

Deanna: Yes. It makes and to be able to sit down with someone and backtrack and look at the records and have them already know who you are, what you do, and is not afraid of it, because at the other clinic, I ran into a few nurses who would advocate for exercise and whatnot, being a good thing, but discourage you from doing too much of it because that's when it gets complicated. Make your life easier. Why do you have to run 10 kilometers? I want to because I did before. I think I still can. I just have to work harder for it.

Craig: You wanted to make diabetes fit into your life and they wanted you to fit into diabetes.

Deanna: Yes. It's like change your life and just this is your life now. For someone who had dance, moving, fitness, exercise, that's who I was. That's who I am. To be told that that doesn't fit anymore because this new unexpected thing did fit into your puzzle, it's devastating. I had to think about prediabetes Deanna. She worked so hard all of those 25 years and you're still that person. You have this thing, and do you really want to let all that hard work go to waste simply because you're now diabetic Deanna who likes to dance.

Craig: When you do your first Tough Mudder race, how tough was that with type 1?

Deanna: It's terrifying mainly because I was still on multi-dose injections. I was so new to all of it. I had to carry this big backpack that I got.

Craig: What was in your backpack?

Deanna: I had to carry insulin because in case I suddenly spiked, because of the stress. I had to carry needle tips and antiseptic wipes and my blood glucose meter, which was huge at the time because it was the starter one. I didn't know any better. I had to carry my strips. I had to carry Dex tabs and sugar packets, and just anything possible in case I went low, and I had to time everything. A half-hour before the race starts, you have to. We had timed it. You're going to have a snack and this is what you're going to have. You're going to inject half the amount of insulin. Of course, that happened to be the day where the race ran late. My plan went out the window. I had to fly by the seat of my pants, figuring it out.

Craig: You ate, and then the race took too long.

Deanna: I ate and the race took too long.

Craig: Then your blood sugar started going up.

Deanna: Yes. Then I'm like, "Oh my gosh, run on the spot. Do something." Of course, it also happened to torrential downpour all morning and all throughout the race. Testing was a nightmare because your strips would get wet, and I'd have to start again, or there's water on my fingers and there's mud everywhere. It was like, oh God. On the back of my very large glucose meter, I typed out the plan in terms of, if you test and this is the number, then this is what you're supposed to do. I laminated it and Velcroed it onto the back of my meter so that I could just flip it over. I thought it was ingenious.

Craig: Is that just because you felt so new at the whole diabetes thing?

Deanna: I did. I had never done a Tough Mudder competition without diabetes, let alone with it. I didn't totally yet understand because it is a learning curve, not just understanding what the plan is. Anybody can learn to carb count, but to actually understand how your body is going to respond to the carbs you eat and then to exercise. Like you said, it's an individual thing. It's not anything that can come out of a textbook. I was still at the point where I was at textbook level because I had just gotten that consistency of having my nurse and had really just begun the journey towards understanding what diabetes meant in my body.

Craig: The plan's always changing. Even if you have a plan, even if the race starts on time, even if you run at the same pace and do other things sometimes it's not going to matter.

Deanna: No, it's not. Of course, I always say, everything that could have gone wrong that day did, and I didn't finish the race. I came so close. I was four kilometers away. I stopped because the paramedic stopped me.

Craig: How come?

Deanna: I finally found a paramedic and went into their tent so I could test in a dry area, and my sugars they were getting low, and he looked at that and went, "I don't like the looks of that, you have four kilometers left." I was like, "I know, but I can. I'll sit here. I'll eat some Dex tabs. You can watch me, right?" He goes, "Okay. You're going to do that. There's an obstacle like right over there. I can see it. I'm going to come over there. You're going to do it, and then when you get to the other side, you're going to test, and if I don't like that number, I'm driving you back down the hill." That's exactly what happened.

My number had come down even further, mainly because it was so cold, that my body was shivering and trying to warm itself up, and top of running gone top of all of that. So they told me back down to the paramedics' tent, where all the hurt people go. [chuckles] I'm put in a different tent with a bunch of others. They're like these really big, burly, strong-looking dudes. I'm sitting there, and everybody's like, "Oh, why did you get brought back down?" I said, "I'm a type 1 diabetic, and they didn't like the looks of my numbers, and so he brought me back down."

They all look at me and go, "We're type 1 diabetics, too. They brought us down, too, today." [laughs] I went really, so it became like, "Oh, what kilometer did you get brought down? When were you diagnosed?" Then when I said, "I had four kilometers left, and I was diagnosed in April," they look at me and go, "Oh my gosh, I've had this for five years, and I got taken down like way before you. You did better than me." So we made our own finish line. [laughs] We did. That made me feel a bit better because that was really the first physical competition that I had done post diagnosis.

In my head, I built it up to be like the be-all to end-all of, if I do this like I can beat diabetes in my head. Then he took me down the hill, and the whole time there, I remember I was like, "Diabetes won today. It won. I lost." Then finding those other people and hearing their stories, and realizing how brave it was and how well I had done considering my situation, kind of made me feel, this was attempt one. Maybe it's not about win or lose it, it is just try.

Craig: Looking back on that day, do you still feel like diabetes won?

Deanna: Some days I do, that's the hardest part of this disease. This condition is that I think we all have days where we're like, "I'm a diabadass," and look at all the things I do and I'm awesome. Then there are days where things aren't cooperating and the plan doesn't work, and you go, "Oh, diabetes won today." I'm too tired to do this. Overall, I'd say, I'm pretty proud that I attempted it. I now that I know more about my condition and more about my body. I can't imagine what I was thinking doing it at that point. That if I had been in the place I am now, that maybe I would have actually crossed the real finish line, because I would know better how to treat myself.

Craig: Do you ever feel like now that you have type 1, that all is dance and physical activity isn't worth it?

Deanna: No, I don't love diabetes, but I love the dance and the fitness. Nothing can take that away because I know that I would be miserable if I didn't do it. So if doing it and putting in that extra effort means that I'm happy or happier because I get to do what I love, then it's worth the extra work. I hid my diabetes for most of that first year and a half. Nobody at the fitness center that I teach at knew that I was type 1, until this year in November [laughs], for World Diabetes Day. I hosted-- I'm a Zumba and a Pilates instructor. So we had a Zumbathon, which is like a big Zumba class for everyone, pays a certain amount of money, and it goes to a charity. I've done it for a few years now.

I chose to do it for I Challenge Diabetes, which is Canadian non-for-profit agency agency run by Chris Jarvis, who's an Olympic type 1, but he was an Olympic rower. When everyone asked, "Why are we doing that?" I went, because I am type 1, and I go to their events and help them with some of their events, and we're going to do it on National Diabetes Day on November 14th. It was a shock to them. It was scary as heck for me.

Craig: Scary, you're telling them?

Deanna: Yes.

Craig: How come?

Deanna: Simply because there is such a stigma attached to diabetes as a condition, and I think that was the most surprising thing is that how little I knew about the care for type 1, and how little people know about what it means to have a diabetic body. It's astounding. The stigmas are the exact opposite of who I am and what I do, and so I think I feared for the most part that the minute I said it, suddenly I wouldn't be fitness instructor Deanna. I would just be diabetic Deanna. Everybody knows the jokes of, "Oh, you must have gorged yourself on Oreo cookies and that's why you have diabetes control yourself."

It's hurtful, because majority of the type 1s I've met are the most health-conscious, active people I think I've ever met, who really in this case, my body just decided that Beta Cell cells suck. That's it, without my control. There's nothing I could have done to cause it, there's nothing I could have done to stop it, and there's nothing I can do to reverse it. Yet, the minute you say it, people see you differently, or I feared that they would, and I figured it would be negative.

They proved me wrong, and anything thought more of me, and the same thing happened with-- I met my current boyfriend. I met him after diagnosis and met him, I don't know how many-- I was just shy of a year into diagnosis. I hid it from him for our first date. By our second date, I was like, I need to tell this dude because if he's going to head for the hills, then you better do it now. I told him. I was nervous, and same thing, he did not think less of me. He thought more of me for doing all the things that I do, despite having this extra thing in my life, even though he didn't understand it yet. The main thing was I thought that I wouldn't feel any relief having told everyone, but it was worse trying to hide it. It felt more shameful, and worse when you have to duck into a room to inject your insulin or just test your blood sugar, because you're scared everybody's going to find out. It feels like this dirty secret.

Craig: Did you feel that shame every time you did that?

Deanna: I did for a while, and especially, more so I'd say in social situations. I would not go to parties, especially at the beginning and really refrain from a lot of things because it was too stressful. I was scared. What if something happened and nobody can help me? There was just a whole slew of things that could possibly go wrong, and I didn't want to deal with that, Some people, who were friends, took that personally and took it as just hurry up and get over it. I went, this isn't something to get over, this is something to learn and to figure out, and it's going to take me longer than not going to be ready for your barbecue in a couple weeks. I'm someone who can vividly remember life without diabetes, because I lived for 25 years without it.

Thinking about all those milestones of New Year's now with diabetes; it's nine o'clock, I get to go take my needle now. Last year I didn't have to do that. That's a huge life change, and it's very hard, and when you're trying to hide it, it just makes it harder. Now that people are aware, you still are always going to get the silly comments from people who all they know are those stigmas, but you take it as an opportunity to educate as best you can, and sometimes it works and sometimes it just goes up and over. For the most part, people who know you and actually genuinely take the time to know you, realize that that's anything but the truth.

Craig: You were diagnosed just after getting accepted to York University for Doctorate of Dance. What do you study in a Doctorate of Dance?

Deanna: When you're studying dance at the doctoral level, it's more about looking at dance as a cultural anthropologist. So looking at how dance is part of our culture, socially, emotionally, physically. Specifically, I look at how dance can be used as a tool for assisting young girls with body image and self-esteem issues.

Craig: Do you think being diagnosed with type 1 diabetes helped you decide to study self-esteem and body image?

Deanna: I do, because at the same time that I'm deciding, "I'm going to look at body image and how people's body is in the way that they look or the way that they are really affect them." I'm being so affected by my own situation. My diabetes changed for-- It changed my relationship to my body, not just that it's given me more work and more responsibility, but also, there is not just a physical, but there's an emotional side to going through that diagnosis process, and then coming out the other side with this diabetic body.

I had never felt so sad and angry all at the same time and at my own body. It's this feeling of, I did everything possible to take care of you, I filled you, I exercised you, I did everything, and then you just went ahead and broke, [chuckles] and I'm stuck with you now, and dance and continuing to teach you Zumba and to involve myself in that world. That was my outlet. That was my escape.

Even though I would drive to my Zumba classes early so I could sit in my car and have a cry for five minutes because I'm like, "How am I going to do this?" Then I would go into a room full of people who are expecting to see happy, hip-shaking Deanna, and I would do it. It was an hour where I got to just be a Zumba girl, and diabetes kind of went on the back burner. Having that break and having that outlet, I think it was central to how I have come to accept and understand my diagnosis.

Craig: At what point after being diagnosed did you realize you were sort of a living case study of your research?

Deanna: That took a while. [chuckles] That's been a fairly recent sort of epiphany, actually. I really sat down and I went, "This is about me. I'm a girl. My body changed. I had issues with it. I use dance to help myself." That's where it came from. Diabetes was-- That's the biggest challenge I think I've ever faced in terms of my body.

[music]

Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing, and our theme music is by Purple Glitter. In the last year, I've made a lot of really cool type 1 videos. If you haven't seen them, you can find them on betacellpodcast.com, or by following Beta Cell on Instagram or Facebook. Be sure to subscribe to Beta Cell on iTunes, Stitcher, Google Play Music, and the NPR One app to get new episodes delivered automatically to you. If you haven't yet, please leave a review on iTunes because it helps other people find the show.

I'm Craig Stubing, and this is Beta Cell.