Beta Cell #013: Type 1 Diabetes: Do You Ever Hit Your Stride? 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: This is Beta Cell, a show about people living with type 1 diabetes. I'm Craig Stubing.
This is the third episode of a four-part T1D Looks Like Me series that Beta Cell is doing a partnership with JDRF for National Diabetes Awareness Month. Each Monday of November, we're exploring a new theme that focuses on some of the challenges that come along with type 1 diabetes. This week, we talked to blogger and playwright Jessie Bear.
On Beta Cell, we've talked to a few different people who are misdiagnosed with type 2 diabetes before the doctors eventually realized they actually had type 1. Jesse also fits into this category. She was only 26 years old when this happened to her.
She has one of the most fraught and emotional diagnosis stories I've ever heard, which she recounted in her blog, Type What Now. A year and a half after she was diagnosed, she adapted her blog into a two-woman play, also called Type What Now in which she stared. Why did you decide to put on this play?
Jessie: I had this experience being diagnosed with diabetes, which eventually became type 1 diabetes in February 2014. At the time, I was probably about 70 pounds heavier than I am now. Over the course of the next few months, as I started to manage type 1 diabetes, one of the consequences was that I started losing weight.
Something that was happening consistently was people would see me and congratulate me on losing weight and tell me how great I looked. Even sometimes asked, "What's your secret?" It was really tempting to be like, "Oh, well, I got an incurable autoimmune disease." Rather than do that, I thought-- I actually, in this crazy, mostly awful experience, have gained some insight into ideas about body image that I think would be worthwhile to share with people, so I started to blog.
All I did in the first six posts on the blog was just tell my diagnosis story. I got a really exciting wave of responses from people. I heard from people who had diabetes, I heard from people who didn't have diabetes. People were just writing me and saying, "I can really relate to this, the things that you say about hating yourself and hating your body, and then learning to appreciate it in a different way. I'm really connecting with it."
I'm also a theater maker. I realized that the most powerful theater I've ever made has always been deeply personal and this felt like a story that would translate really well to the stage. I don't normally act in my own stuff but in this case, I felt like, "Well, I probably could tell the story best." I decided to turn the blog into play and premiered it about a year after I started the blog, which was about 18 months after getting diabetes at the 2015 New York Fringe Festival.
I hate my arms. I hate how fat they are. I hate the fact that hands down when I hold them up to the side. I hate how tightly they fit into normal sleeves. I hate the way the fat expands when I press them against the side of my body. I hate my stomach, obviously. I hate my calves they're humongous.
I hate my thighs because when it gets really hot out, I can't really wear a dress or a skirt because my legs will start to sweat and rub against each other when I walk. I get a rash there and it super hurts. I walk around literally hurting with every step as though my body is saying, "You are so disgusting. You don't even deserve to walk without pain." I am enormous. I am enormous and I hate, I hate, I hate that I am enormous.
Craig: That's how you felt in December of 2013?
Jessie: Yes. I think if you are a woman and you are not a society mandated weight if you don't fall into a very specific weight range that society has determined is appropriate, you are hit daily with a daily luge of the reasons why you're not enough or not acceptable. I had spent my entire life really overweight and battling with my weight.
I certainly could have stood to lose some weight, every time I went to a doctor I was told that. Ironically, if you look at the true markers of health, which are things like blood numbers, cholesterol, A1C, before I got sick, all those markers were actually quite good for me. I was swimming along. I was just carrying probably an additional 50 pounds and I didn't really feel that.
I was physically fine and able to live the life that I wanted, but I was so unbelievably unhappy with how I looked that it really permeated every moment of my day. I was at a rock bottom in 2013. At the end of that year, I remember I stepped on the scale. I weighed 211 pounds and I thought, "This is the worst I've ever felt about myself. This is the most disgusting I've ever felt."
That list that I started the play with, it's really wrenching for me to relive it because it's so there. I can so easily snap back into that mindset. That's the first 10 of 100 that I could have pulled up if I had wanted to. [chuckles] I think my original draft had 50 and I realized it took 50 minutes to recite them. I thought, "People probably will get the picture at the end of the first 10." [chuckles]
I say in the play and I think about this a lot. It's a perfect irony. I sometimes wonder if I didn't make a deal with the devil somewhere. If I didn't say like, "I would do anything to lose weight." Then, "Oh, irony of ironies. Well, you're going to get an autoimmune disease, and that's going to force you to do it."
Of course, looking back, now I would take that body back in a second, because that body was actually perfectly, beautifully, functional and was able to do for me everything that I wanted it to do. I just had no appreciation for it whatsoever. I was completely distracted by this all-consuming self-loathing. It's not something I'm proud of, for sure.
Craig: Lots of people later in life get misdiagnosed with type 2 diabetes when they have type 1. Usually, that's because they're just old enough and it's coming on slow enough that it just looks like type 2. Unless you're actually testing for the antibodies to prove you have type 1, there will be no real way to tell.
When you start experiencing these symptoms, and as you say, in the play, you wait a long time before going to a doctor to confirm your suspicions of type 2 diabetes. They think you have type 2 for a very different reason and that's because you're so overweight. When your doctor first comes and tells you that you have type 2, what did that feel like?
Jessie: It was awful. It was among the more awful moments of my life. I had spent so many weeks trying to deny it. Essentially, what happened is I started having all the symptoms that you have when you get diabetes. I was thirsty all the time. I was peeing all the time. I was exhausted all the time. I, of course, googled it. I googled "peeing all the time." [chuckles] Of course, the first result that came up was diabetes, and so it was in my head.
I thought that this could be what was happening. I remember thinking, "Will type 2 diabetes comes on slow? If I really discipline myself, and I just starve myself and I eat nothing, and I work out all the time, maybe I can lose enough weight that by the time I have a physical," which was scheduled for three months from then, "it'll just disappear."
Because, obviously, with type 2 diabetes, they call it, put it into remission, you can be disciplined enough with your diet and exercise that you don't actually need to take medication or be on insulin. I thought, "Oh, maybe that can happen and it'll just never even pop up on my doctor's radar."
I was getting so sick so fast that I was getting more and more desperate with my attempts. I would try and work out and just collapse because I would be pushing myself way beyond what I could do.
I was having these insane food cravings for juice. That was my thing. I would just dream about fruit juice probably because my body needed sugar so bad. I was just in such bad shape. I was falling apart. I had been weighing myself and I saw that I was losing weight. I lost 10 pounds in a week. I weighed myself before going to bed. Then I woke up in the morning and I weighed myself again, and overnight, I had lost a pound and a half.
I was in spectacular denial but I was smart enough to know at that point that I was in really bad shape and I had to go to the doctor. This was beyond my shame or my vanity. My life was at stake. I went to my doctor and I said to her, "I think I have diabetes." She said, "There's no way you have diabetes. That's crazy." She weighed me and I had lost 18 pounds or 20 pounds and she was like, "Wow, that's fantastic. Great job. You've lost all this weight."
I said, "No, I haven't been trying to lose weight. This is not a good thing. I really think that inch." "No, no, it can't be that." I felt I was trying to convince her [laughs] I'm totally sick. She left the room to review my blood test, sorry to review my urine test. I just took a urine test and I just knew she was going to come back and tell me that I had it. As the minutes ticked by and she didn't come back, I knew she's not coming back because she doesn't want to tell me because she's devastated.
That was exactly it. She finally walked into the room, probably like 15 minutes later. I saw the look on her face. She didn't even have to say anything. I just looked at her face and I suddenly- I had a vision of having to tell my parents.
I had a vision of having to tell my boyfriend. I had a vision of having to tell my friends. I just saw all these moments when I looked at her face and I thought I'm going to see faces like this that sort of like pitting, disappointed look.
I really thought I was being punished for being overweight. That was what society kind of teaches us about type 2 diabetes. It's 100% not how I feel now, but at the time, it was like people who are fat and can't control their diet and lack discipline, they get this as punishment.
I thought, "How bad do you have to be at controlling your diet to get this at 26?" Because you hear about people getting this in their fifties or sixties, and I'm 26. This has happened to me; I must be just the worst. I must be lower than low. That was what that moment felt like to me.
Craig: You go home with type 2 diabetes. Eventually, your doctor calls you and tells you to go the ER.
Jessie: It's funny. I went home, I went to the appointment where she diagnosed me at 10:00 in the morning or something. She said, "Take this metformin and go home. Here is a bunch of paperwork. Think about this. Here is a glucometer. You going to have to learn how to test your blood sugar."
Then, it was 9 o'clock that night and she called and said, "Oh your blood work all came back. You're in DKA and you need to get to the ER." I went to the ER and they took a bunch more work. I know now that what happened was, they tested for antibodies, they tested my C-peptide.
My C-peptide came back really low, which meant that my body actually wasn't producing that much insulin. Type 2 in DKA would have a really high C-peptide because the body would be producing as much insulin as it possibly could to try and bring the blood sugar down, but it's just not enough for type 2.
In my case, my C-peptide was lower than normal. My body was not producing that much insulin, which was a sign that it was type 1 and that my cells were actually just dying. I tested positive for the GAD antibodies. These are two tests that if they run them in a normal weight person would instantly confirm type 1. There would be no question.
What the doctor actually said to me that night was, "We think it might be type 1." Then, I didn't know why. I didn't know what that meant. I didn't know really even what type 1 was. That was so not on my radar.
I talk about this in the play, my only experience with type 1 diabetes was the Babysitter's Club. Stacey and the Babysitters Club have type 1 diabetes. I had seen the movie and it seemed like a really cool disease because she was really pretty and really skinny and she got to sort of demand food sometimes.
In the movie, she collapses and her maybe-boyfriend notices her collapsing and he's very solicitous. It seemed like a very sexy disease. Obviously, I knew like slightly better than that, but in my head, that was literally my only association with it. Disease for hot skinny people where they get to demand food.
As soon as she said that, I just thought, "Well, there's no way she's wrong." Then, I went to the ICU. The next day I had a bunch of doctors and nurses come in and type 1 didn't come back up. They were just talking about type 2. I remember saying, "Someone said to me last night I might be type 1."
Most of the responses were like, "Well, probably not." It was only after I got discharged and I got assigned an endocrinologist, many days later, almost a week later, I was sitting in an endocrinologist's office. She was like, "This is a 100% type 1 diabetes."
There's no question of that. I had spent about a week getting sort of amped to the idea that I had a type 2, thinking about that, thinking about what it would mean, thinking about, "Well, okay, if I do a really good job managing this, I can get off insulin." Just suddenly have someone tell me, "Well, it might be type 1."
Was an extraordinarily confusing thing. Because on the one hand, if it was type 1, I would get to be a victim because I didn't make type 1 happen to me for being overweight. That was just something that struck me randomly. Whereas if it was type 2, I wasn't a victim. I was just implicit in my disease.
I would say as my disclaimer, I believe disease makes everyone a victim. There's nothing complicit about getting diagnosed with diabetes, whether it is type 1 or type 2. It's not a judgment call, but at the time, it just totally felt like a judgment call. I was so deep in my self-loathing that I could really believe it was type 1.
I kind of wanted it to be type 1 because I would get to sort of unburden myself. I also kind of didn't think it could be type 1 because that would mean that I wasn’t a dumb-fat-jerk who did this to myself. I also kind of wanted it to be type 1 because I didn't really know what tpe-1 meant, except that it was that sexy disease that Stacey had in the Babysitter's Club.
I also wanted it to be type 2 because I had this vague sense that type 2 meant I could maybe not have to be on medication for the rest of my life. It was just totally confusing. When I ultimately was sitting in that endocrinologist’s office and she said, "This is type 1 diabetes," it felt like that would be- I can't believe I'm saying this to you.
Please don't kill me as like a fellow type 1. It felt too good to be true that it was type 1. That was just how utterly confused I was about diabetes in general, and especially type 1 diabetes. To all the type 1 listening I don't mean that at all.
This was just a measure of me at a totally confused time in my life. I can't even explain. I feel like I'm just rambling explaining this to you because it was so ridiculously modeled and confusing of a time.
Craig: According to studies, people with type 1 actually feel more shame about their disease than people with type 2. It's because people with type 1 are afraid of being confused with type 2. It's weird to think that we would feel so embarrassed by something completely out of our control, just because of the stereotypes of type 2. That you were aware of that at the time and that's why you were hoping to have type 1.
Jessie: I think I was the most caught-up in that bias. It's really unfortunate. I think that my blog's crusade has sort of removed shame form disease. Disease is just disease and it sucks. Type 1 and type 2 are both totally sucky diseases and neither should carry any weight of shame.
In the months after I got diagnosed, every time I told someone I had been diagnosed with type 1 diabetes, I mean every time, my dentist, the friend of a friend or an acquaintance, every person I talked to I would say that I had recently been diagnosed with type 1 diabetes.
They would say, "Are they sure it's type 1?" It was sort of giving me a knockdown. It's like, "Hey, you seem overweight. Are they sure it's type 1?" It was like, "How could you ask that of someone?" "Yes, you're right all my doctors were totally wrong." It's like you know better just by looking at me.
Craig: How did you react to that at the time?
Jessie: It made me feel terrible. I usually was like, "Maybe not. Yes, you're right, maybe not."
Craig: Well, you knew it was type 1, right?
Jessie: I totally knew it was type 1, but it was so embarrassing to sort of like get that response, because what that response says is, "You know you're fat, right?" It was so shaming that I usually just sort of mumbled like," Oh yes, maybe it's not."
I went to my endocrinologist repeatedly. I would say to her, "You're sure this is type 1, right?" And she thought that I was saying it because I was hoping to get off of insulin, because that had been dangled in front of me in the hospital as like, "If you do a really good job with this, because it's type 2, you can get off insulin eventually."
She would always be so sad and be like, "I'm so sorry. It's definitely type 1." I was saying it because I was like, "I really want to be able to defend myself against these people." You're positive this is type 1 because I would feel totally embarrassed if at the end of the day. All these strangers are right.
I remember the first time I told someone I had diabetes and they didn't respond to that. I remember being like, "Oh." I looked at myself and I realized I've lost some weight, and I've lost enough weight that this is not the first thing that pops into people's heads now when I tell them I have diabetes.
Now I get super defensive about that. If anyone talks to me about type 1 or type 2, I'm like on the offensive. Right away, I'm jumping on them, like, "Yes, I am freaking wish that that was type 2. I wish I had been diagnosed with type 2 diabetes. It would be a lot damn easier to manage and I could be off insulin right now."
I think that that crazy sense of hope that I was feeling that maybe it was type 1, I think I was reflecting something that society thinks and feels. Like, type 1 is much more deserving of your pity or deserving of your compassion than type 2. I think that that's just so insanely twisted. I think it's so unfortunate. How is anyone with a disease like this not deserving of compassion?
Everyone with diabetes, regardless of type, type 1, type 2, type 1.5, any type is deserving of extraordinary compassion, because it's really, really a difficult disease. Type 2 faces its own challenges but also then faces this really nasty bias that, as you're saying, spells into the type 1 world, and makes type 1 probably defensive about their disease.
We can't help this disease, it exists. It can't be until they cure it, but it can't be taken away. We can't help our attitudes towards it. I think that we really need to like a paradigm shift our attitudes towards disease and withdraw this idea of shame or responsibility from it.
Craig: Have your feelings towards diabetes changed since you lost weight?
Jessie: Yes, that's a good question. I think it's funny because I-- Every time in my life before this that I had tried to lose weight, my goal was to lose weight and I was unsuccessful with it. In this case, my goal was actually not to lose weight. My goal was just to have better blood sugar control.
Then the side effect was that I lost weight. I was consistently just choosing food and making food choices that wound up having me lose weight. I think that was the key. It was like my focus has shifted from my weight. Now I can obsess about diabetes and the way that I used to obsess about my weight.
I have found that the shift was made very easily and maybe not for the best. I think that this is something that I have found certainly in the type one community is like people are sometimes private or secret about their numbers. I really, really understand that and I feel the same way.
I remember the first time I ever saw someone with a Dexcom, I had been diagnosed for like six weeks or something. I was like, "Wow, what is this thing?" They explained to me what it was. I reached for it and he pulled it away. He was like, "Yes, anyway," and kind of put it away. I remember being like, "Whoa, what's that about? Why can't I look at his Dexcom?"
Now if somebody tried to take my Dexcom and look at it, I'd probably do the exact same thing. It's like, "I don't want you seeing my numbers. They weren't that great today. I don't need you seeing that." I had pulled it out a few months ago on the subway. It was like six months ago. I turned it on, I think it was like 175 and like dropping, like, "Not bad."
I'll just say that like it wasn't like I was 400, I was like 175. A guy next to me leaned over and looked at it. Then he looked at me and he said, "Oh ate too many sweets, did we?" I was like, "Whoa, guy, are you kidding me?" I think that it's very easy to feel for me the same kind of shame I used to feel about the numbers on the scale.
I can very easily translate that to shame about my blood sugar numbers. That has been like an unfortunate side effect, it's like, "Well, I no longer obsess about my weight but I 100% obsess about my A1C and my blood sugar and feel like a deep shame when my numbers are bad and feel great Alation and like I'm a worthier person when my numbers are good." It's like a sick thing.
On the one hand like losing weight has almost like, I just sort of like found a new outlet for those very toxic feelings. I'm trying now-- It's funny because I think I'm in a really interesting phase. I have gone through lots of phases with diabetes. Because I've only had it for two and a half years at this point, I don't think I've hit sort of like a stride necessarily.
I'm like, "All right. I totally understand how this fits into my life now, maybe, you've had it for a while. Do you ever hit a stride? Do you ever feel like, "I totally understand the place that this has in my life?'"
Craig: No. I know that's not a comforting thing to say but maybe I've had it 15 and a half years. Maybe 16 will be the year that my sweet 16 no pun intended. Maybe that'll be the year that it all makes sense. I think it's only recently that I've come to truly accept it and not in a sense that I thought maybe I don't actually have type 1 like you were saying to your doctor.
I've known that I've had it, I have known it's not going away. I'm not going to wake up and it's going to be okay. A lot of friends of mine, when they say I'm a diabetic, I always like, "No, no, no, you have type 1 diabetes. There is a difference." In a way, I feel like everything that comes with having type 1 diabetes, which is a lot, it's not just counting carbs and taking a shot.
It's having this sixth sense about your body and what it's doing and what it is going to be doing and what it was doing all the time. It's not that diabetes defines who you are, but so much of living with the disease defines how you react to situations. It's not that I can't run a marathon because I have type 1 diabetes. It's, I can run a marathon, but I have to do this, this, this and this to do it.
It's not stopping you from doing things, but so much of your life revolves around it. Literally, the moment you wake up until 1:30 in the morning when your Dexcom goes off telling you you're low, there's no escaping it. It doesn't stop what you do, but it's a part of what you're doing.
Before I let you answer that, that's a great segue, I think. In your play, you test your blood sugar. You explained that it goes off because you go high. I think you say in the performance that I watched that it's not just for dramatic effect. Maybe you would have had it planned that you would test your blood sugar and give a shot so people can see what that's like.
It's actually the adrenaline rush of doing the play is making your blood sugar high and you have to do stuff about it. Coincidentally, my blood sugar right now, my Dexcom just told me I'm slightly low. I'm 77 and it kind of flat. I'm not too worried about that, but I was just sort of a happy coincidence that remember work upon you.
Jessie: I think my it's literally going off right now actually too.
Craig: You can't escape it.
Jessie: No. I know I'm not going to be 77.
Craig: I feel that more than I think it actually is. I'm going to test two while you're testing. It's just going to be a funny thing that we do. The commercial break.
Craig: Music can play over as testing.
Jessie: Well, I didn't play any music in the play. I made everyone watch me test in total silence. I mean it ground the play to a halt.
Craig: Maybe I'll do that too.
Jessie: Yes. Like here's your test of diabetes for five minutes.
Craig: Well, I'm 62. You don't have to tell me what you are.
Jessie: I was one 156.
Craig: I'm going to grab some chocolate milk from the fridge. I'll be back in 15 seconds.
Jessie: All right. I'm going to take some insulin.
Craig: I'm using the same glass that was in the sink for when I woke up at 1:30 this morning, too low and I needed to get chocolate milk. That's kind of my thing like diabetes can make me do a lot of things, but it's not going to make me do one extra dish a day. It's my little victory against it. What were we saying? I've totally lost track.
Jessie: You were talking about the fact that it adds a layer to everything.
Craig: Yes, the diabetic versus having diabetes. That was because you were asking me if you ever hit your stride.
Craig: Do you feel like you're now, a different-- maybe not a different person, but like Jessie Bear plus, Jessie Bear 1.1 now that you have diabetes?
Jessie: Yes, I do feel like a different person. All I wanted before I got sick was to lose weight. I mean that was all I wanted. I thought about it all the time. Then after I got diabetes, I was tuned in. As you're saying, I just was thinking about diabetes all the time.
It was so distracting that it actually made me stop thinking about my weight. I would have said that there was nothing that could have taken the place of my fixation on my weight and my brain because it was all-consuming, but diabetes actually did it unbelievably.
Just as you're saying, you make all these concessions to diabetes to kind of ensure that it doesn't get in the way of the things that you wanted to do. One of the things that I realized was if I shift my eating in a way to optimize my blood sugar, then I suddenly get my life back a little bit.
I can go a little bit longer without testing and without thinking about this. I can do more and I can walk more and I can be awakened, not exhausted, and I cannot have a low blood sugar or high blood sugar that will like totally be so physically demanding it'll take me out of this.
I was suddenly making choices to try and optimize my time and optimize my life. As a result, I lost weight. The focus was just getting my life back. Before I wanted to lose weight so badly, but actually my weight wasn't really standing in the way of anything I wanted to do, I could do the things that I wanted. I was carrying some extra weight, but I wasn't being held back in my life, except mentally.
Suddenly, diabetes just shows up and imposes itself on every aspect of your world. It's always going to be there and it's never going to go away. You try and optimize and structure your life around making that as small of an imposition as possible. If diabetes has taught me anything, it's that my body is pretty amazing. The things that I asked of it, the fact that it can do those things is something that I should have incredible gratitude for. I didn't use to and I do now and that is super awesome. I'm not going to say, "Thank you diabetes," because like, no, but learning gratitude is an extraordinarily powerful lesson.
Craig: In a way, you replace the mental roadblocks you had to doing things you want to do with physical roadblocks of diabetes?
Jessie: Yes. Then you realize that the mental roadblocks there nothing compared to the physical. [laughs] It's like the physical ones really do literally sideline you. You have no choice when your blood sugar is low. You have to take care of it. It makes the mental roadblocks seem a lot more surmountable if you will.
Craig: Do you think that the process of living with type 1 diabetes and having to take care of yourself and you being the person keeping yourself alive and making decisions every hour, every minute sometimes, do you think that process made you appreciate your body for what it is and contribute to that self-love?
Jessie: Yes, 100% and incredibly well articulated on your part too. I think it took me a year and a half to be able to articulate that. [chuckles] I remember when I first started getting it, it took a really long time. My doctors had said, "Your blood sugar is going to be totally out of whack," when I was first discharged from the ICU. Because I was in DKA, when I got diagnosed, and they said, "It takes the body a really long time to recover from this. Here's all the things you should do to achieve good blood sugar control, but it's probably not going to work that well for the first couple of weeks."
It was so unbelievably frustrating because I would be doing everything I was supposed to be doing and I would still be seeing these really high swings and the first time I ever went low and experiencing that and it was just so rough physically. I remember I was diagnosed in February, so June-ish. I started having pretty good days where I remember suddenly being like, "Oh, I haven't thought about diabetes in an hour and a half." That was totally awesome and I totally felt a rush of appreciation.
I'm so astoundingly grateful to my body when it performs the way I request it to perform. I completely took it for granted before. I didn't even know what a pancreas was before. [laughs] I'd heard the word but I took my pancreas for granted. I took every organ in my body for granted. This is in my play, and I totally stole it from my boyfriend, now fiance.
He said to me once I was feeling just totally down on myself. I'd had a really hard day and my blood sugar had been all over the place and I felt lousy. I was tired and I just said, "This is so unbelievably unfair. Why is this happening? I can't believe I just have an organ that doesn't work." He said, "Yes, you do. At this exact moment in your body, there's 10,000 other systems, all of which are working perfectly to keep you alive.
Your lungs are working. Your heart is working. Your blood is flowing. Your brain is working and it's connecting to your eyes and your ears and your mouth." It was really stunning moment when he gave that to me, because it really does open you up to how well your body does work. When you lose a piece of it, and you suddenly have to recreate that manually, not only do I appreciate what it could do before, but I really do appreciate what it can do now and I'm so grateful for it. That's pretty amazing that our bodies can do that for us.
Craig: I know sometimes when I am having a bad diabetes day, to be fair, most days have some bad diabetes element to it. No day is perfect, right? You're low, you're high, this is or that. Do you get angry at your body for that? Have you replaced one self-hatred with another?
Jessie: Yes, it's--
Craig: Because I do. I can't even really blame the disease because it's not really doing anything. It's done the damage. It's hard to blame, I don't know, the universe. Factors that I don't even really understand, things I can't even pinpoint. Do I blame the line chef at the restaurant who put too much salad dressing on my salad? Because you're the one controlling it, you feel all the decisions are because of you and all of the results of those decisions are because of you.
There's definitely times where I'm in the high 200s. My blood sugar is not coming down and I get so angry. I'm not sure if I'm angry at myself. I don't really know what I'm angry at, but I definitely will be like, "All right, I'm going to just soak myself in insulin to get this down." It's like an angry bolus. Is that a thing? An angry bolus?
Jessie: Oh my God. Yes. Where you're like, "What would my stupid doctor say I should take? Well, my insulin to carb ratio is this and my insulin sensitivity factor is this. I need 2.94 units and I'm like, "Yes, I'm taking five and everyone can go after themselves." Yes, absolutely. I talked to you for an hour about how gratitude is the path to enlightenment and how important it is. I think that I'm getting so much better at it, but it's a daily struggle. I 100% feel such frustration. Actually, this is a totally weird story, but I actually only test my blood sugar on six of my 10 fingers. I don't know why. I'm sure I'll eventually move to all 10.
Craig: Which six?
Jessie: The three middles on both hands. I don't do thumbs or pinkies.
Craig: I never do thumbs.
Jessie: It's more painful. I don't know.
Craig: It's just a weird shape. I don't like it. [laughs]
Jessie: Yes. Right now I'm on the six. I think that one thing that I realized, and this was a totally weird moment, was my right index finger is where I was default going without really thinking about it just because I'm ready and that's what works best. I started to develop a sore spot because I was doing it consistently in the same place. Then when I realized that I thought, "Oh, I got to branch out." Now I've been making a concerted effort to do other places and that sore spot really hasn't gone away.
I noticed a few months ago my blood sugar was really high. I was mad, and I was testing. I was defaulting to that spot. Then I realized every time my blood sugar is really high and I'm really pissed off, I test in that spot. It's like I'm punishing myself because it hurts. That's just the spot that I go to when I'm mad at myself. It's almost like a mini punishment for myself.
In the same way that then you anger bolus and you're like, "I don't even freaking care if I'm going to be 50 in an hour and a half. I'd rather be 50 in an hour and a half than be stuck up here longer." These are feelings that I feel very regularly, totally relate. I have to work through them and exercise them and then hopefully come back to a much better place. Even as I was talking about my show to you earlier, I was starting to feel better and really feel that gratitude again. I realized I haven't felt it for a few weeks. It comes and goes, but I'm just trying to feel it more than I feel the other pissed off-ness.
Craig: Which happens all the time.
No, nobody is perfect, but in another way, everybody is perfect. Including mine and including yours.
Craig: This is going back to what you started talking about at the beginning of the interview about how your play is to tell people they're beautiful. Can you tell me how you say that in the play? How do you convince these people they're beautiful? What are the words you use?
Jessie: It's definitely the moment that I was most afraid to do. I woke up one day and I had realized it. When you wake up and you've come to a decision about something and you're like, "Yes, that's the right answer." I hated the answer. I was so terrified to do it and I project a massive picture of myself from before I got diabetes at my heaviest.
I realized too that if you don't know me and you come and see the show, you're watching a person tell the story about being overweight. You're not actually seeing them overweight. You were seeing me at the weight I was at that time and the weight I am now. This is also a moment if I show you a picture of me before, you're going to see like, "Oh, she was telling the truth. She really did really weigh that much and she really did lose that weight."
It was also important to me that if I was going to show what I look like before, I did it at the end of the play when hopefully, the audience is going to see me differently. They're not going to see the picture and think, "Oh, that's a fat person." They would see the picture and think, "Oh, that's what Jessie used to look like. Look at that functioning body that she had." I project the picture. I'm giving this monologue about beauty. I turn and I look at the picture of myself projected and then I say like, "I was beautiful then. I was this beautiful then as I am now."
Then I look at everyone in the audience and I say, "You're all beautiful too." Then I look people in the eyes and I try to look everyone in the eye. I have a fairly small house, I think it was a 40% house. I would look at everyone and tell them how beautiful they were. Every show, there would be one or two family members, friends who had known me but maybe never seen this side of me.
They would be crying and I would be crying and then there would be all these strangers crying. It was just this room full of people who hopefully are thinking about and seeing each other and themselves in a different way. I say in a play, "What isn't beautiful about a human being who is alive?" That's really true. I think everyone is extraordinary and everyone is beautiful. Your body, despite any limitations that it has, is just a beautiful thing.
Craig: Are you happier today than you were at the end of 2013?
Jessie: Yes, for sure. Not because I've lost weight but because I feel I have a new appreciation for my body and for myself. I think too when you get sick, it really shifts perspective on what matters in life and the people that love you and the people that bands together to support you. I feel closer than I've ever felt to my friends and family and to myself too. I feel I've learned a lot about myself, which is not to say that diabetes is a good thing because it sucks. Thanks to the people that I care about and a lot of hard work. It has forced me to a very different place with myself.
Craig: It sucks.
Jessie: It sucks. [chuckled]
Craig: But it puts a lot of things in perspective.
Jessie: Totally. Very well said, much better said than I said. [chuckles]
Craig: [laughs] If you could go back and talk to your old self, what would you tell her?
Jessie: I think I just needed a hug. I just was so mean to myself. I just really needed a hug. I needed someone to give me a big hug and say that I was worth it and valid and mattered and just as beautiful and functional as anyone. I would tell myself that nobody hates me as much as I hate myself. There's not a big conspiracy of people surrounding me, whispering about me and I'll say it again like a broken record but more grateful for what I had and what the extraordinary things that my body was doing.
Every single day, I had a real-life pancreas with a real-life beta cells in it. They were really producing insulin exactly as much as I needed for every meal. I eat a waffle and my body knew exactly how much insulin to give me. That's so awesome. I do such a worst job than my old pancreas could do. I wish I could talk to my old pancreas and give it a pat and thank it for putting in its hard work and assure it that I will never do as good job as it could do.
Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing. Our theme music is by Purple Glitter. If you want to show your T1D journey and how life with this disease has shaped your approach to life, you don't have to write and star in a play like Jessie. Just visit typeonenation.org and join the conversation and the coping with diabetes group.
Be sure to subscribe to Beta Cell on iTunes, Stitcher, Google Play Music, or the NPR One app to make sure you don't miss our final episode of this T1D Looks Like Me series. You can find Beta Cell on Twitter, Facebook, and Instagram at Beta Cell Podcast.
I'm Craig Stubing, and this is Beta Cell.