Beta Cell #018: Cassidy Robinson Transcript

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Craig: This is Beta Cell. A show about people living with Type 1 diabetes. I'm Craig Stubing.

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Craig: In the summer of 2017, the nonprofit Beyond Type 1, put together a team of 20 people with Type 1 diabetes from around the world to bike from New York to San Francisco, over 10 weeks in an effort to raise money and more importantly, awareness for what it means to live with type 1.

This is the beginning of a series where I interview members of Team Bike Beyond to figure out what compelled them to sign up for this team, and how the journey has changed them since. This first episode with Cassidy, who has spent her whole life listening to her father tell stories from when he biked across the country at 22-years-old. Now, she has her own to share too. What's your first memory of having diabetes?

Cassidy: No one's ever asked me this question before.

Craig: Because you were diagnosed at two.

Cassidy: I was diagnosed at two.

Craig: You don't remember being diagnosed. You probably don't remember the first few years of having diabetes?

Cassidy: No. Oh, my gosh, no. Absolutely not. In third grade, there's two classrooms that were connected, and there was a little hallway between the two of them. I had to go into the hallway and that's where I would test my blood sugar. My mom would put a box of snacks, so basically like-- When I was a kid, there's always like a clear box of snacks in every one of my classrooms.

When you ask now, I literally have like a very keyed-in visual memory of being low, getting up from my desk, testing my blood sugar and drinking two juice boxes in that middle like corridor. It was third grade. In fifth grade, I had a seizure while we were at recess. I was playing handball with my friend, Sarah. I remember playing handball, things going blurry and then I remember waking up. I was on the table in the nurse's office and my mom was there. Yes.

Those are my two youngest diabetes memories. I've had three seizures in my entire life and that was the first one. Another one, sixth grade. Sixth grade during PE we were running. PE man. "This is why diabetics shouldn't exercise," says the lady who wrote a bike cross country. In sixth grade, we were running. I remember I stopped running because I felt like I couldn't move. I was barely walking.

Two of my friends grabbed me and just like, I can remember them holding my arms then taking me to the nurse's office and this really, really nice girl Liam, just saying, "Is she okay?" They were like, "No, she's not okay." She knew I was diabetic. I remember her saying, "Does she want my Skittles?" [laughs] They were like, "We're going to the nurse. Thanks." That's my visual memory of that moment is like, I can remember Liam McConkey yelling, "Does she want my Skittles?" Probably in my brain, I was like, "Yes, I do. I need them." I needed glucagon.

Craig: At what point did you take over your sort of diabetes management, from your parents managing it for you?

Cassidy: It was like when I went to sixth grade. I've been to diabetes camp one time. I was about 10-years-old, it was between fifth and sixth grade. Basically, the idea was that my parents sent me to camp so that I could learn to give an insulin injection. I went to camp, my older brother went with me, and my mom and my aunt. I don't remember really much from camp, except that they had a pool that was dirty, that I didn't want to swim in.

I remember sitting in a room, practicing on oranges, practicing saline injections on oranges. We came back from camp. My dad wasn't with us, and so my dad wanted to see if I was ready. He was cutting down this giant tree in the front yard that we used to have. I remember I was sitting on the brick fence for hours, just with a bucket of water next to me, a syringe in my hand and an orange, over and over and over again, practicing giving injections.

It was when I was 10. I took it. It really like, it was mine. When I took over management, it was mine, which is fascinating to reflect on because I had no idea what I was doing.

I didn't learn what the insulin-to-carb ratio was, until I was in college. The doctor just said, "You give this shot of long-acting at this time of day." I honestly don't even remember at what time of day. "Twice a day, once in the morning, and once at night, you give this." It was NovoLog that I was on. Like, "You give this shot of NovoLog, this many units."

Which is crazy because that has nothing to do with managing the way that we manage diabetes now. Basically from 10 until I was 14 or 15, the insulin pen was out now. It was like, "Carry this around with you at all times. Before you eat, you give-" however many units. There was never an insulin-to-carb ratio. It was always like, "Well, before you eat, you give three units, you give two units. You give five units, you give whatever it is." I was like, "Okay, I can do that."

That was too much for me when I was 15. 14, 15, way too much for me. I just stopped, I stopped being a diabetic. I didn't want to be one anymore. I didn't understand why I was doing anything. I didn't want to, I didn't feel good. I just like stopped doing everything. What I would do, basically like 15 and 16 and 17. I would test my blood sugar once every few days, the meter would read high, and I'd give 20 units of insulin.

I would test my blood sugar and give insulin for another like three days. That's insane. I can say it's insane because it's me. If I heard someone else was doing that right now, I'd be like super, super nervous about them. There's an educational moment of, "Do you know what diabetes is? Do you know what diabetes does when it doesn't burnout? Do you conceptually understand how insulin works, or what insulin is, or why you need it?"

Back then it was just like, "Oh, this diabetes thing. I don't want to do it and so I'm not going to unless I feel absolutely awful." I think I was using a OneTouch Ultra meter. I think the high on the OneTouch Ultra meters was five or 600. My meter just sat high for years, for three years, which is nuts. I'm just like, I can give 20 insulins at that time and just plummet. Even if you're that high, you're still just like go super low.

It's was like, I worked around-- It's amazing for me though that I did really well in high school, like I had a good GPA. I felt like I was the editor of the high school yearbook, that I played sports, like I was a softball player. I had friends. I was kind of fun to hang out with for a little while. It's amazing to me that any of that could have happened in the actual weight of my body loves.

Craig: Why do you think you didn't want to be a diabetic anymore when you were in high school?

Cassidy: What ended up happening to me and this really only came about because I started talking to some of my LGBT friends, about their coming out experiences. I think that I was having this experience of essentially coming out as a diabetic. Once I started giving those injections myself. A couple years go by and then in high school, all of a sudden it hit me really hard that I wasn't like everybody else. Because my parents have never ever in my life told me that I can't do anything. My parents, they didn't raise me different than my brothers. They didn't raise me different than my friends. I was never withheld from doing anything. Which is amazing. What happened is in this moment as a teenager, I had this almost awestruck moment of, "Oh, you mean, everyone's not doing this math in their head all the time. Everyone's not going through, poking and prodding."

Despite the fact that I wasn't counting carbs, when I looked at a plate of food, I was reacting to pain because I knew there was an injection. As a child, I called my mother Cruella, for the majority of my childhood because she stuck me with needles all the time. I used to tell my father, I hated him. I don't hate my father. He's literally my best friend, but I told him, I hated him because he stuck me on needles all the time. Because they had to live for me.

When I get to being a teenager, I finally have this moment where I understand that I'm different. That these things I go through are not things that anyone else goes through. I think I didn't have any diabetic runs. It was in high school, in this moment, I come to realize, "I'm different," and that sucks.

Being different, especially when your difference is associated with physical pain. The physical pain of being injected with a needle, it's like, "Oh, that's awful." What if I try not being different? What if I just decided that I don't know. It went well because I didn't accidentally kill myself by not managing diabetes. It didn't go that well, because I felt terrible. I felt so awful all the time.

Craig: Did your parents know you weren't managing your diabetes?

Cassidy: No, I lied about it. They knew because you can't hide your A1C. My A1C for years is in the 11th, 12th, 13th. In the doctor's office with my mother, she knew that I'd been lying. When before dinner, my dad would say, "Did you test?" "Yes." "What were you?" "120." "Did you get insulin?" "Yes." "Okay, you ready for dinner or do you want to wait?" "No. I'm ready." I just lied. I lied for years, and years and years and years.

There's a moment in my life where I said, "I have to stop actually lying to my parents. If you think about it in this scary time situation I put myself in, in diabetes management, Back then diabetes is un-management. The only people that ever could have saved my life are my parents, if they needed to. I lied to them for years, every single day about the potential for them to have to do that was there at all times.

Because I was lying to them about testing my blood sugar and what it was, and whether or not I'd given insulin, they didn't know how close that was to having to be called on. Now I'm like, "That's a really rude thing to do." It's really rude that my parents were probably a half step away from having to save their kid's life and I was like, "Let me just lying to them about not giving them the info, how close they were. That's so crappy.

Craig: Did you ever tell them that you'd been lying to them?

Cassidy: Yes, totally. Yes. My junior year of high school, I go to winter formal and then we were taking photos and I couldn't breathe. I thought my dress is too tight. I take my best friend into the bathroom, I'm like, "Can you just undo part of this dress I can't breathe?" She was like, "Yes. Whatever," and it didn't help. I said, "I really can't breathe." My parents were there and they said, "What's your blood sugar?" I was like, "I don't know." They're like, "We will test it." "I don't have my meter."

That was the moment and they were like, "You don't have your meter?" You're going off to winter formal and you don't have your meter?" I was like, "No. It's at Kelsey's house," my best friend. "Why would you leave your meter at Kelsey's house? You don't look good." I was like, "I had to sit down." I literally could not breathe.

This is the moment I think where my dad got what was really going on in all my lying, was that, he said, "Okay, you guys all wear Orange County kids, and we think we're cool. You guys get in your limo," and then instead of going to dance, the limo is going to follow my car and we're going to Kelsey's house. We're going to test your blood sugar." Like a limo full of all-- [laughs] this like high school kids, they're my friends, but how embarrassing is that.

The limo follows my father's car. When we got to my best friend's house, test my blood sugar and it's high. It's the first time my dad-- They actually seen that happen. I've been lying and telling him my blood sugar is perfectly in range for years, at this point two years. He was like, "Well, you're not going to the dance." I lost that because I wanted to be a regular kid and it was winter formal.

We gave insulin and he right then and there made my best friend, and we've been best friends since kindergarten, made her promise that she would physically test my blood sugar, and call him and tell him what it was every hour throughout the entire night because he knew I wouldn't do it. That's what we did. We test the amount, she came, got me on the insulin. Every hour on the hour, we test my blood sugar, called my dad. It was just High, high, high, high, high until the next morning.

If that was happening to me now, if I had my meter read high right now, I go immediately to the hospital. Instead we just gave me-- I gave a little bit of insulin and a little bit of insulin and a little bit of insulin. My senior year of high school I said, "I need to start taking insulin." Something in me was like, "I know what I'm doing is wrong." During this time, every few days, maybe I'd get my Lentes injection.

There was no insulin in me. I didn't have basal. I didn't have fast-acting, I had nothing. My senior year, I said, "If I'm going won't do anything, I'm going to check my basal. I'm going to take my Lente test, so every single night I took my Lente test. Never missed it. Then I start college, and I went for my eye exam and they said, "You have a hemorrhage in your left eye." What does that mean? They said, "Well like when you close your eye, do you see a dot floating in your eye?"

Yes, I do. I was with Kaiser and so they could see my entire medical record, all my history, and the ophthalmologist came-- He left the room and then came back into the room. He said, "He wasn't sure how to have this conversation with you." Oh God, what does that mean? I'm like 18. I think 19-years-old. He said, like very blunt. He said, "If you continue managing your diabetes the way you are, you're going to be blind by the time you're 30."

I was like, "Oh," it's having air knocked out of you. Because the only thing I want in my entire universe is to be outside. The thing I love doing it's being outside. Because everything's gorgeous outside, there's so many leaves and trees and birds and come on, who doesn't love the sunset and the sunrise? It was like I had my eyes dilated, so I couldn't drive myself home. He tells me this and then I have to stay in the waiting room while my pupils go back to normal so I can drive home.

I'm sitting here with this info, slow tears every now and then and then anger for an hour-and-a half or something, like sitting in the waiting room. On that night, I remember I went to a huge party with all my friends. I got completely drunk and I went outside and bawled my eyes out against my friend's garage. I was like, "I don't want to be blind, and if that means that I have to be diabetic, I'm going to be a diabetic tomorrow."

It was literally the next day, I started looking at insulin pumps on the internet. Started deep diving on what is diabetes. It was the next day that I started. I literally googled what is diabetes. I started caring about myself enough to manage well big giant change in your life to decide, "Wow, this insulin dosing and all this carb counting. All the exercise I'm doing and all the desserts I'm choosing not to eat because I don't want to ride the roller coaster of them."

All of those decisions are worth it because I'm worth that. My life is worth feeling good for. It's very nice to walk around your universe and enjoy your life, to laugh and joke. Actually, I wake up in the morning with a freaking smile on my face. If you would have told 16-year-old me that was possible, she would have slammed her door right in your face and put on some punk rock music and just shut you out. It's such a big giant marker of change. My complicated diabetes life.

Craig: Even though, the I am rigid is what triggered this, it seems like what it really was is you just learning to love yourself almost, and be like, "I'm worth this. I'm worth the shots." All those shots that your parents were giving you that you hated them for, you finally realized that. I don't know you had to do it. It was worth doing. That pain every day was for some greater good maybe.

Cassidy: Well, I think it comes back to, despite the fact that this body I inhabit is different from the body that most of my friends and family inhabit. Despite the fact that like that living experience is different, it doesn't mean it's less worth worthy of love. Which like from my friends and family, all I've ever received is love from them. I'm so thankful for them all the time for that. Going through that moment of recognizing my different body, is just as worthy of my love as if it were a regular body.

Now in the advanced state of that, my question is always like, well what is a regular body? Does a regular body exist? Then you really like, once you get to that point you can see way further past like how silly it is. All that it took to get there was so serious to accept something that was like, "Nobody's body is normal." What is normal? It doesn't exist, but it does when you're a person who's like-- when you're a person who like lives with disease especially invisible one, that was like bite beyond.

There was this gorgeous moment in Ohiopyle, where it was like all 20 of us sitting in this river with our feet in the water with devices of all kinds all over us. There was no hesitation and just like hopping in your bathing suit and hopping in the water and sitting around. The next day, I didn't want to think about my devices. I didn't once think like, "I wonder if those people sitting over there with their dog are going to think we're weird." Not once because we were like the power crew in that moment.

If anyone's sitting in that river wanted to be anyone, people wanted it to be us and not the other way around because we were the ones in the middle changing the world in our small little way. Why wouldn't everyone else want to be like us? I typically think the opposite, which would be like, "Sometimes I'd gave anything just to have like a normal functioning body." In that moment I didn't want a normal functioning body. I was really proud to be part of this crew of hunky device wares, who like have a dead organ floating around inside of them. [chuckles]

Craig: Has your relationship with your parents changed since you started taking better control of your diabetes?

Cassidy: Yes. My parents are like my best friends. I think what allowed us to actually be as close as we are, which is extremely close, is the fact that having better management meant, I wasn't hiding or lying to them anymore. Also, like generally my mood changed. When I was a teenager, I was horrible to be around. I was so moody. My parents are saints, like dealing with me in that state, and then like my two brothers who are also very moody. We are emotional kids. Just like having better management really tempered my anger because I just feel better. My parents were really, really supportive bike beyond.

Craig: Your dad the trip?

Cassidy: Yes. The whole reason I wanted to do Bike Beyond at all, it's because my dad's cycled cross country when he was 22. Starting two years before by beyond when I moved to New York, I said it to like some of my more adventurous friends like, "Probably be fun to go on a bike tour across America." All my friends laughed at me because they're like, "You don't even ride a bike. Why would you want to ride a bike across America? You won't ride your bike like five minutes down the street and back."

The option to do Bike Beyond was presented. They called for applicants and I just didn't hesitate. I didn't realize how badly you want to have this thing in common with my father. Not until right now was it ever possible for me, which is like, "That's not true." I didn't need bike beyond to cycle cross country. I didn't have to have it. I know a lot of diabetics who have cycles cross country now, some of them this summer, some of them previously in their lives, but a diabetic can go on cycle cross country.

I just didn't realize that I wanted the safety of other diabetics to do it, until Bike Beyond was presented as an opportunity. When we got accepted to the team, December 23rd last year, and I was with my parents for Christmas. I'd flown in and so I told them. They were nothing but supportive, and also they were like, "Well you better learn how to ride a bike."

Craig: Do you think going from that winter formal, when your blood sugar was high, your dad dragged you and all your friends to your friends to test your blood sugar. Do you now, finishing this bike ride that your dad went on, do you think part of that desire to do the bike ride was like to prove to him that like you're all right now? Like you can do this.

Cassidy: I've never thought about it that way. Yes, probably. It was a big thing for me moving to New York to live on the opposite side of the country from them with no one around. Yes, I have like my East Coast family, but to be separated in an emergency from my parents is a big deal. I think they were really nervous about me going to New York because they probably didn't trust me. Part of them probably still didn't trust me with my own management. Then I was there for two years and I did really well and my management had never been better.

This moment of like following my dad's tire tracks, yes, it's probably a big one in my parents journey with diabetes, for the fact that I was out on the road. They've never been the kind of parents that will call and just ask me what my blood sugar is. Even just hearing from me every three or four days in the middle of like putting my body through the ultimate like test, they were totally fine. They trusted me enough with myself to just like let me have it, to let me live out this adventure while I was in it.

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Craig: Beta Cell's produced, recorded and edited by me, Craig Stubing, and our theme music is by Purple Glitter. Be sure to subscribe to Beta Cell wherever you listen to podcasts to get new episodes delivered automatically to you. If you love Beta Cell, you can support us financially at any amount at our patron page. Visit betacellpodcast/supporters for more information. We even have some awesome Beta Cell swag to send you as thanks. For more information about Bike Beyond, or if you want to attend a viewing, or even host your very own screening of the Bike Beyond documentary, visit bikebeyond.org.

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