Beta Cell #003: Craig Stubing Transcript
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.
Craig: Hi everyone, Craig here. This episode is being released on January 7th, 2016, which is my 15th anniversary of being diagnosed with type 1 diabetes. To mark the occasion, I thought I would share my story with you this episode. I asked my good friend, Reny, to interview me.
Reny: I'm a trained professional, so you have nothing to worry about. Do you want me to go ahead and get started?
Reny: This is Beta Cell, a show about people living with type 1 diabetes. I'm Reny Partain.
Reny: The one thing that I always feel I want to know when I first meet someone with diabetes, is what was their diagnosis story. Craig, tell me about your diagnosis story.
Craig: I was done diagnosed in 2001, January 7th, 2001. I was 13 years old. Everyone always says how you see the symptoms in retrospect. That year, I remember just being thirsty all the time and never being able to stop being thirsty. I was eating more too. I remember the first time I had a triple cheeseburger from Wendy's. My parents are knotted up to puberty, growing boy. At the time, I was playing ice hockey. After every game, drinking a tonne of Gatorade, drinking a tonne of coke. I didn't really feel like anything was wrong. Up until a point, I would get this really dry mouth. Like, this is beyond just thirsty.
I remember going to the mall with my mom, my little sister, and brother. I was so thirsty, my mouth was so dry. I couldn't talk, trying to whisper to my mom, I need something to drink. I remember thinking, this is such an awful way to live. I didn't want to live with it anymore. I wasn't suicidal. I didn't want to kill myself, but I thought, "Please, God, just make this stop." I can't live the rest of my life like this.
Reny: Did you get to the point where you were hoping that there was something wrong to explain why you're feeling that way? Or did you just want whatever it was to go away?
Craig: I distinctly remember just wanting life with this to end. I didn't think it was something wrong with me. I just thought this was just my body. I would just have something. I was drinking so much that obviously, I had to pee a lot. I remember twice actually peeing my pants because I just couldn't hold it anymore. Once was in school, we were on a field trip and we run a bus for a while. It was winter and we had our coats. In my own seat, I remember tonnes of traffic, and I just couldn't hold it. We got there and I went straight to the bathroom. I was like, "Okay, there'll be towels or something and I can dry myself off." There wasn't towels, there wasn't even a hand dryer. It was this bizarre machine I've never seen before with cloth. You would wipe your hands, and then you would roll it through. It was high up on the wall. I was just like, "Well, I'm screwed." I had my big winter coat on, so no one knew, but I could feel it and I knew.
Reny: Which was just enough to make you uncomfortable?
Craig: Yes, really uncomfortable. I remember it happening another time when my family was going to visit my grandma in the hospital. Then getting to her room and going straight to the bathroom. I don't know if my grandma noticed that I was sick, but afterwards, I felt bad about that. That she was going through this awful thing, and she was seeing her oldest grandson falling apart. After that, my grandmother passed. This was about the time my symptoms were really bad to the point where I was pretty much sleeping all the time. Everyone's knocked it up to depression. Then I was just sleeping 23 hours a day, for days. My parents thought, "Oh, he's just sick. It's just a flu or something."
Then my mom took me to the doctor the day before we were going to come back from winter break. We went in, and they had me do a urine sample. I came back to the room and they took it to go test it. I remember falling asleep on the examination table while they were testing this. Then I remember waking up in the car as my mom was driving me to the hospital. I was still really thirsty. She said, "The doctor said, the only thing you can have is ice." She had a cup of ice, and I was just downing these ice cubes.
Reny: You couldn't get it any fast enough?
Craig: Yes. I don't know why it had to be ice. Why it couldn't be just a cup of water.
Reny: That seems like cruel and unusual punishment. Here, you're thirsty. Let me give you a cup of ice.
Craig: Yes. Then everything is almost like in flashes waking up in the ER, with an IV in each arm, being in the ICU, waking up again in a regular room. Then I had type 1 diabetes.
Reny: Life changed as you know it.
Craig: Yes. It's weird because it doesn't feel like there was a moment when it happened. The whole thing is just so hazy. It almost made it easier to just transition into, okay, I take shots now. I prick my finger like on cabs.
Reny: In this first few months after you were diagnosed, was it ever a relief to finally be able to say, oh, this is what was going on with me. I have diabetes that explains why the past few months had been so miserable?
Craig: I don't think I ever looked back on it like that. Now I do. At the time, I don't remember thinking, "Oh, this is such a relief." Because having type 1 was such a life-changing experience. It was like I was trading one set of problems for another set without thinking, "Oh, thank God, I don't have those. All I have to do is prick my finger six times a day and take five, six shots."
After the break, Reny asked me what it's adjusting to life with type 1 diabetes.
Craig: Even though this episode of Beta Cell was about me, it's still for you. One of my goals for Beta Cell to help spread the word about what living with type 1 diabetes is really like so that no one ever has to feel scared or ashamed of their diagnosis. If you've enjoyed listening to the show, please share it with your friends and family so we can reach even more people.
As you'll hear later in this episode, I love receiving your feedback. If you have anything you want to say, you can find Beta Cell on social media, and you can email me at firstname.lastname@example.org.
Reny: You said you were diagnosed, went into the doctor the last day of winter break. Then clearly you're in the hospital for just under a week. What was it like to be home for this amount of time, away from your friends, and then suddenly be back in school and have this new diagnosis?
Craig: I went to a private elementary middle school. There were just about 20 kids in my class. After I was out of the hospital, I'd ask my friend, Steve, "What happened from your end?" He said that Monday morning when I was in the first class, he knew something was wrong. I guess they waited until the end of the day when they were on PE to tell my class that I was in the hospital. They spent the PE class writing get-well cards. I still have them somewhere at home.
Reny: What was the best card that you got?
Craig: There's only one card I remember and it was from Emily. It had said on the front, "Every dark cloud has a silver lining." Like you had said before, the dark cloud of diabetes, the silver lining was getting rid of how awful I felt and wanting to die.
Transitioning into school, it was really easy because everyone knew that I had type 1 diabetes, even if they didn't really understand what it was.
Reny: Do you feel the fact that all the other kids in your grade already knew that you had diabetes helped to make the transition smoother?
Craig: Absolutely. I guess I didn't even really feel that different because I had known these people before I had type 1. They knew Craig. Then, after I got type 1, it's not like anything really changed and they didn't perceive any change. The fact that they knew and I didn't have to come out and tell them meant I didn't ever have to acknowledge that I had really changed.
I was never, "Hi, I'm Craig, I have type 1 diabetes." That changed when I went to high school. I remember telling all of my teachers freshman year, but I don't think I told anyone. I don't know if I was intentionally hiding it or there was just no reason it came up. I get out of class before lunch, go straight to the nurse's office, test, and I was just a few minutes late to lunch. I'd find my friends, sit down, and no one was the wiser. Eventually, I told people, some of my close friends, senior year.
Reny: Was it just easier to not bring it up?
Craig: Yes. I mean, why complicate it? There's always this fear that once you tell someone you have type 1 diabetes, every time they see you, that's what they'll think of, not necessarily in a negative way.
Reny: It suddenly becomes a part of your identity.
Craig: Exactly. I think there was a real fear of that, of being Craig with type 1 diabetes.
Reny: Now that you're an adult and you've got all of these years of diabetes wisdom under your belt, how do you handle disclosure now?
Craig: I still probably don't tell people. I always feel like if it's not a conversation I have with someone in the first or second time I meet them, it just becomes more and more awkward to have that conversation, because then they know you've been keeping it from them for so long.
I was on injections until I graduated from college, and then I got an Omnipod. I was always conscious of-- If I was ever wearing it on my arm, I would wear a long-sleeve shirt, just in case I did something and it peaked out. There was one time when I was in our break room at work and had a short-sleeve shirt on, my pod was on my arm, and my supervisor said, "Hey Craig, what's that thing on your arm?" I panicked and I said, "It's a pedometer."
Reny: [laughs] Just a really, really fancy cool one.
Craig: Yes. She was like, "Really?" I'm like, "Yes. I just wear it on my arm." I didn't really let her look at it, I just brushed it off. Much later, I decided at one point that she should know. I think I texted it to her. She's like, "Oh," and didn't really make a big deal about it. Still, to this day, I'll meet people and I make that decision, "Am I going to tell them right now or am I never going to tell them?"
Reny: You talked about, when you first got the Omnipod, always wanting to be able to cover it. I'm sitting across the room from you, and here's this diabetes tattoo on your forearm. What made you decide to get that?
Craig: I think I did it to remind myself that I'm not the only one with type 1 diabetes. It's like you're having a bad day. I can look down, and I can see this blue circle on my forearm, and I think tons of other people have this, tons of other people fight through this every day like I do, it's like, "I can do this."
Reminding me that type 1 diabetes isn't a crutch or an excuse as often as it can be, "I can't do this because my blood sugar's low. I can't drive for the next 10 minutes," or, "I don't want to eat that piece of cake because I'm 300," but that there's no limits, that type 1 diabetes doesn't prevent you from doing anything if you figure it out.
On a bad day or a bad hour, a couple of times an hour, I can look down on it and I can remember that I'm not alone. I think that goes back to not knowing other people growing up and part of the reason I'm doing this. There's a lot of us out there. We're not hard to find if you want to find us. I think it takes everyone a little bit of time to get to the point where they want to meet other people because you feel different at first, and then you get to the point where you want to get over that. It's a constant reminder to me that I'm not the only one.
Reny: What do you think the relationship, if there is any, between having type 1 diabetes and that sense of guilt?
Craig: I still feel guilty that I missed the last days, weeks, months of my grandmother. We were really close, and I still wish I could go back in some way. I don't know if I knew she was dying. I guess I assumed she'd be out at some point. Even if I knew it wasn't going to be okay, I don't know if I had the physical or mental capacity with my blood sugar, as high as it was at that point, to process it or do anything differently.
Reny: Going back to one of the first things we talked about with that Get Well card from Emily, what has been the most unexpected silver lining to your dark cloud?
Craig: Is it cheesy if I say this, Beta Cell?
Reny: I think this is pretty awesome. This is a pretty good silver lining.
Craig: After the first episode, I did the email blast to everyone. I got an email back from a friend from college, and she said that her father had type 1 diabetes and had passed away, but that she just really appreciated the fact that I was doing this and sharing these stories. Hearing that from someone who I didn't think had any relation to type 1, that was part of it, realizing how few degrees of separation there are, and that she felt so moved by it. That's when I knew this was something important.
Beta Cell is produced, recorded, and edited by me, Craig Stubing. Our theme music is by Purple Glitter. Special thanks to Reny Partain for being our interviewer this episode. You can find Beta Cell on Facebook and Twitter at @betacellpodcast. You can subscribe to Beta Cell on iTunes and Stitcher to get new episodes delivered automatically to you.
If you haven't subscribed to our newsletter, you can do that at betacellpodcast.com. You'll get an email every time there's a new episode along with new stories and thoughts from me.
If you like Beta Cell, please leave a review on iTunes because it really helps other people find the show.
I'm Craig Stubing, and this is Beta Cell.