Overcoming Weakness

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Craig: From Beta Cell and JDRF, this is Lunch Break, the midday live streaming show about people living with type 1 diabetes. I'm your host Craig Stubing. We have people watching on Beta Cell's Facebook page and JDRF's Twitch channel. We'll be taking questions from our viewers at the end of the show, so send them our way while we're chatting, and we'll get to that at the end. I'm here today with Dave Holmes, the Editor-at-Large for Esquire and Michael Sebastian, the Editor-in-Chief of Esquire. Hey, guys.

Michael: Hey, thanks for having us, Craig.

Dave: Hey, Craig. Thank you.

Craig: Of course. You guys were both diagnosed with type 1 as adults. Yes. How old were you both?

Dave: Correct. I was, I think 43 or 44.

Michael: I was 34, thereabouts. I think Dave and I are going to talk about the same thing that we were both misdiagnosed with type 2 or something like that. They really weren't quite sure with me.

Dave: Yes, same thing. I think your general physician when you present with a high A1C and you're an adult goes to type 2. 95% of the time, they're right, but 5% of the time, they're not. We happened to fall into that 5%. Every other person I've ever talked to who was diagnosed in adulthood has the exact same story. No doctor is going to go right to type 1.

Michael: Yes. In fact, I have a unique story that when I was 21 years old, I had a brain surgery to remove a benign brain tumor. The way that they found it was that I had a seizure randomly, only one I'd ever had, and they had put me on an antiseizure medication, which they just kept me on for all those years. When I presented to the doctor with this incredibly high A1C, he had this theory, which was that people on this drug for a long time sometimes have elevated blood sugars.

He thought if he took me off of this, I would be cured. Sure enough, they did and my numbers went down to basically to normal, which I think we all know now is that honeymoon period. The doctor, God bless him, thought that he was going to make his name writing a medical journal or medical article out of the fact that he had found this-- I was one guy who basically had elevated A1C from this. That ate up nine months or something like that of them just kind of monitoring for that drug that I was on.

Craig: When you finally got the diagnosis of type 1, was that a relief? Type 1 is hard. It's good to know what you have. You don't want to be misdiagnosed with something, but it's not like, "Oh, we thought you had this, but you don't. The test was wrong." It was, "Oh, we thought you had this, but you actually have something much more complicated."

Michael: It wasn't a relief for me, no. In fact, it was kind of overwhelming.

Craig: Do you remember when you got that diagnosis?

Michael: I do very much so. I feel like I'm not somebody who thankfully has ever really struggled with mental health issues or depression or anything like that, but it threw me into a funk like I had never really experienced before for at least weeks. I give so much credit to my wife who was nine months pregnant at the time when this came. She pulled me out of it basically with the support that she gave me and the room, really, the room to feel what I needed to feel and then pulling me out of it.

Craig: Dave, friend of Beta Cell podcast, you've been on many times before. Listeners of the show have heard your story, for people who have not, you were misdiagnosed as type 2 right after you ran the, I think, 2009 New York marathon.

Dave: New York City, yes.

Craig: It was five years of being misdiagnosed.

Dave: I was on metformin for a number of years. My A1C stayed high, didn't go much higher, but it didn't become normal either. Every time I went back to the doctor, it was just, "Let's put you on more metformin, and also, you should just eat fewer carbs." I did everything that I could do nutritionally, and then I took my metformin which made me super sick, not all the time, but every once a month or so, I would get very, very sick.

Then, whatever, I guess this was my honeymoon period, and then in 2015, my blood sugar went super through the roof. I was testing. I was pricking my finger like crazy. There was nothing I could eat, there was no amount of activity that I could do that would bring it down. I remember, I met a friend for breakfast, and I had an egg white omelet with kale. Then afterwards, I was at 320 and I was like, "Now, I just don't know what to do. I don't know what to do."

I took myself to an endocrinologist and he ran all the tests and, and that was pretty much that. Then, those last few weeks, I got all of the symptoms that we recognize as symptoms of type 1. I lost a ton of weight, I was in the bathroom constantly, I was always thirsty, all that kind of thing. For me, it was a relief because at last there was a way to bring my blood sugar down and I knew what was actually going on with my body, which is good to know.

Craig: Michael, you are the Editor-in-Chief, Esquire magazine, there's a new issue. It's out now, I believe.

Michael: It is out now, yes.

Dave: Came in the mail yesterday for me.

Craig: The theme is why are we like this? What does that mean? Where did this come from?

Michael: It evolved over the course of several months. It actually started, we were going to do an unwellness issue. The idea of the unwellness issue was essentially the opposite of the [unintelligible 00:06:23], which was celebrating all of the things mentally or physically that might be bad for you. I'm really glad we didn't do that. Considering everything that's happened in the world now, I'm not sure how that would have been received, but the more we talked about it, the more the people on staff and the people who write for us, including Dave, you started to talk about all these hidden anxieties that they have, hidden or otherwise.

We started to collect those and ask people to write about them. Dave's essay leads off this package that we have in our issue. Dave wrote this excellent piece about how he didn't immediately seek emotional support after getting diagnosed with type 1 diabetes. I had never really been public about my own diagnosis. I told some people but more or less kept it pretty close to the vest. I read that, and it was almost like he was unconsciously calling me out saying like, "You should come out and tell people about this." In my own essay, which was my letter from the editor, I wrote about it which was really the first time I'd ever done that.

Craig: Can I get you to read just a segment of that?

Michael: Yes, absolutely. This is part of it right here. "I kept this secret for so long because it felt like a weakness. I'd experienced my fair share of major medical issues. I broke my leg playing high school football. When I was in my early 20s, I had brain surgery to remove a benign tumor. I quickly recovered both times. I beat them, but type 1 isn't something you defeat.

I could barely bring myself to accept that I had this chronic lifelong disease, let alone talk about it with other people. Quietly muscling through this seemed like strength, that's what most men are led to believe, and it gave me some measure of ownership over this thing I couldn't overcome when in fact, I've spent the last five years on the verge of an anxiety attack."

Craig: I was diagnosed at 13 years old. I was at a small school in seventh grade, there were 25 kids in my class. They all knew I had type 1 because there were only 25 of us. When you miss a week of school, everyone wonders where you were, but as soon as I went to high school, I didn't know most of them. Only two people from my middle school went to my same high school and I didn't tell anyone.

I would stop at the nurse's office after my class before lunch, I would test my blood sugar, and then I would go and I would find my friends in the lunchroom. It doesn't take that long to prick your finger, give a shot. I think to this day, it's still a weird thing to say I have type 1 diabetes. Even just saying it now, it gives me goosebumps. I'm not sure why. Do you have that issue, Dave?

Dave: I didn't have an issue telling people about it because, again, for me, it was a relief. I was very concerned about my health for a very long time, and trying to do everything I could do to make myself better and it wasn't working. When I saw a doctor and got put on the right path, I was relieved, and I didn't mind people knowing. That part of it was never a huge concern for me, but what was difficult was, and this is what I write about, my endocrinologist and my diabetes educator, I went through the whole thing where, "Here are the portions. This quarter of your plate should be a lean protein and all that kind of stuff.

She was also like, "There are happy hours on meetup.com that you should go to." That part of it was really difficult, just the idea of admitting that I would need to talk to another human being about how to keep myself healthy physically, and mentally, and emotionally, and all that kind of stuff. That was really difficult, which is surprising for me because I don't think of myself as that kind of person, but I guess I was for a little bit.

Craig: It is almost more difficult for you to tell other type 1s that you had type 1?

Dave: A little. I knew, going in, if I was going to meet people, I was going to be needy and I was going to have a bunch of basic questions. That admitting weakness to myself in that way for whatever reason was really difficult. It's not unlike what we're going through right now, what all of us are going through right now. When we talk to each other, in this time that literally none of us has ever lived through before. This is totally unprecedented in our lifetime. We're stuck in our homes. The future, in many ways, is uncertain. When we talk to each other, and we ask how we're doing, it's like, "Fine." We all need some emotional support right now. I'm not finding it easy to ask for it or to admit that I need it or whatever. It's all still strange.

Craig: Michael, you talk about how type 1 feels like a weakness, even though it's something that we don't choose. We haven't done this to ourselves. It doesn't necessarily stop you from doing anything. I mean, Dave just ran a marathon last year. People with type 1 are able to do all the things that people without type 1 can do. It requires a little more mental energy, a little more planning. Where do you think this feeling of weakness comes from?

Michael: It's a great question. I was looking to dispel that notion a bit in the piece that I wrote, which is this idea that I had to come to the realization that it wasn't a weakness. The reason that I think it did, like that portion that I read, which was that it was something that I couldn't be. It's something else that I say in the piece, which is that, essentially, you do all this work every day to manage this thing and the reward is you don't die. That's what you get at the end of it, which is great, obviously. At the same time, it's just it felt like something that I couldn't just say, at the end of the day, just go, "Okay, now I'm done with that. I beat it, it's over. Now, I can move on."

I'm going to totally butcher this. There was an interview that Mary Tyler Moore gave at some point in her lifetime where she was talking about her own-- She kept her diagnosis secret for a while before she finally came out and became such an active person in the type 1 community. She was saying that it was hard for her to reconcile this idea that I have this very serious disease that requires constant management, but, actually, when I manage it, it's no big deal, you don't have to worry about it. That to me, that contradiction is something that I feel like I had a real hard time managing in my own head.

Craig: This feels like a very masculine Problem. Does that sound right?

Michael: I think that's definitely true.

Craig: You asked me about this, Dave, of my podcast and the breakdown of male-female, who's following it, who's interacting with it. I believe I said 80% female, 20% male. My own observations are when men seem to talk about type 1, it's typically in an athletic way, like, "Oh, I have type 1, but I just did a marathon. I just did this Spartan Race, I just did this or that." It's all these athletic achievements of us, overcoming this perceived weakness, like a way to like, "We, despite this, despite all odds."

It's the same sense of the game-winning bottom of the ninth home run, or the Hail Mary at the end of the football game as time expires. It's like, "You are winning in the end, despite all these odds against you, and it makes you more of a hero." No one cares about the baseball team that has the blowout World Series, you win 20 to nothing, no one cares. That's not what makes it onto that highlight reel. It's something about that. I don't know, have you felt that way?

Dave: I think the keyword is I. There's some stubborn thing in the male ego that wants to say like, "I did this. I beat this. I faced this challenge, and I did it. Here's how I got through it." There's an element of we in this thing. At the beginning, I really remember the first few times, Craig, that you and I have hung out socially, it was like two people, but then the food would come and I would be like, "How do you do that?" because you really do need to figure out how you're going to eat meals and what the carb contents going to be in, and how much to take and when you're going to take it, and when you're going to know that you did it right, or if you're going to need a glass of juice, or you need more insulin or whatever.

There's all this stuff that you need and really, only another person who has lived it can really tell you. It has to become a we and I think we all want to make it I. Here's what I did. I won.

Craig: Michael, when you write in your piece in Esquire, you're coming out as type 1 diabetic. You say, "I have type 1 diabetes." Was that hard to type?

Michael: It really was actually. I spent a long time on that. It wasn't because it was necessarily hard for the words to come, but it was hard to actually really type that, then send it off to the editor who worked on it for me. What was weird, I had this circle of people that I spread it out to as well, some of the people who were very close to me that I hadn't already told. I wanted to share it with them first. Actually, there's a guy who works at Esquire. His name is Nick Sullivan. He's our creative director. He's been at Esquire for decades. He has a 16-year-old son who has type 1 diabetes.

I felt like such an imposter around him because he and I traveled together. We spent two weeks together in Europe earlier this year in close quarters sharing a car. He had his son's Dexcom on his phone and it would go off. He would text his son or he'd get on the phone with him or something like that. I just sat there quietly and played dumb. It was so immature of me and really weak of me, you know what I mean?

I was actually really nervous to tell him about this because I worried that he would be like, "Why were you essentially lying to me?" Not overtly, he never said to me, "Hey, do you have type 1 diabetes." I never said to him, "Hey, I know what that's all about." Thankfully, of course, he was very gracious about the whole thing and proud of me and everything else. He's British. When I sent it to him, he simply wrote back, "Nice job." which I feel like is the British stiff upper lip way of giving you a big congratulations.

Dave: That's huge.

Michael: Right, exactly.

Craig: I've done the same thing with friends in college, coworkers. We would go to lunch every day. We would go down the street to Chipotle, eat our whole meal, we'd come back to the office, and then I would take my stuff, I would go into the bathroom and give myself a shot. Thinking now what all of those carbs were doing to me in that time, which when I started eating to the time, I actually give that a shot. Thank God, I didn't have a Dexcom at the time because I would have been horrified. It was kind of this ignorance is bliss. Now, it's like I've got the timer on my watch of at what point can I stop pre-bolusing, when does the 10 minutes hit that I can start eating?

Afterwards, it was when I started the podcast, and I emailed everyone, I said, "Hey, I've started this podcast, this is my story." Some of them, it was like, "Oh, you have type 1? Huh. Why didn't you say anything? It wasn't such a big deal to anyone else.

Michael: It is kind of amazing, isn't it? How much it exists in your head. That barrier exists in your head. I think that, as Dave pointed out, we're talking about type 1, but it seems that there's something incredibly universal about this, whether it's anxiety that people might have about COVID-19 or anything. That's something that I also wanted to get across, not only in the piece that I wrote, but I think what Dave wrote and the whole package that we put together, which is this idea that whatever it is that you're experiencing, A, you're not alone, and B, it's much bigger in your head than it is in reality.

That seems more prescient than ever, given everything that we're dealing with right now. A few weeks ago, I was standing in my kitchen and I was listening to the radio. The song Night Moves by Bob Seger came on, a stupid song I've heard two million times, and for whatever reason, I burst into tears listening to this song. It was the whole thing with the coronavirus, and it was just this maelstrom of emotion. My wife walked into the kitchen, and first, I tried to conceal it, but I was like a blubbering baby. You know what I mean?

I was so embarrassed that it was this stupid song, Night Moves, that is what did that to me. I think it was just I was mourning all of the times I had heard that song before the whole world turned upside down, and just all of the times that I had been in a car or whatever and taken that moment for granted. That's what overcame me. I feel like we're all, all of us are having that moment, either once or throughout the day, or whatever, and that if we don't talk about those things, we're all going to be worse off as a result of it, right?

Craig: Right. You have an interesting-- I don't know. Your own little journey is going to be interesting because you've gone into this quarantine or sheltering at home as a publicly nondiabetic, and you're emerging from this quarantine cocoon as an outed type 1.

Michael: Right, and with a mustache too.

Craig: I'm sure you follow people on social media, but are you going to go to Meetups? Have you thought about even that far yet? It's going to be a while before we can actually meet people in person. It might have its own other sense of now, we can finally meet each other because we've been isolated so long.

Michael: Yes. I haven't really thought that far ahead, but the idea of meeting up with people in real life sounds so awesome that I don't care what the setting is, I'm there.

Craig: Whatever the conditions.

Michael: Right, exactly.

Dave: Do you remember that? Do you remember going places?

Craig: You, guys, answered this question in this issue of Esquire, "Why are we like this?" The question I want to pose to you is-

Dave: I don't know that we answered it. I still don't know why I'm like this, but at least putting it all out there, I think, is really is interesting and thought-provoking and I hope-

Craig: We might not know why we're like this, but we know what we are, I guess. You've laid it out

Michael: Right, yes, maybe that's it.

Craig: I guess the question is, where do we go from there? Adult men with type 1 diabetes, how do we not feel so ashamed, if that's not the word, afraid of support, afraid of meeting people, afraid to do things like go to walks or bike rides or runs with all the various organizations out there that do that, the systems in place for us? How do we get ourselves to do it? You, Dave, you went to that first meetup. You met me at that meetup. Eventually, we went for a run.

Dave: Yes, that was it. We literally put one foot in front of the other and just ran. Not too long after that, I don't know if I said something about it on Twitter, or maybe it was in a post for Esquire, I don't know, but I mentioned, in passing, having been diagnosed. It wasn't the point of whatever, it was that I was saying, but because of that, a couple of other people reached out to me with the exact same story, one of which was Michael Sebastian. I made the point of making friends in a type 1 setting, which was super important, and then in talking about it, I found another community among people who I already knew and liked who we could also share that experience.

That was really comforting. That was a real pressure valve, a pressure releaser for me. I think just the more open we all are about our own struggles, whatever they might be, it doesn't have to be the point of every conversation that we have for the rest of our lives, but once we are open, we then allow other people to be open about the same things, and then we can have conversations about them. We can make it whatever our struggles are a part of our lives and deal with them, rather than denying them and making them more important than they need to be.

Michael: That's a good way of putting it, Dave, making them more important than they need to be.

Craig: Maybe let's take a moment and admit something we've been struggling with, with type 1, these past few weeks, stuck at home. I'll go first. It's my idea. I've been trying to eat very healthy, but there are lots of my comfort snacks, which for me is chocolate covered almonds. I go through like a box every two days, only because I stop myself. I feel really bad when I eat them all. I feel good when I eat them, and then when I look at the empty box, I feel really bad. It hasn't been terrible for my blood sugar, it's because I space them out over the course of the day, but I do feel guilt. That's my shame.

Dave: Why do you think you feel guilt?

Craig: I think it's just the sheer amount of them. I'm trying to eat healthy with everything else. The nice thing about being at home is I can really cook meals all day, for the first time. I can make eggs and pancakes. It's now down to one pancake a day with fruit and I can have coffee. That's a nice healthy meal, as opposed to instant oatmeal or a yogurt. Then over the day, I just have this huge box of Trader Joe's chocolate covered almonds, and every time I walk past my living room table, I just grab a handful of them.

Dave: Let me put a couple of things out for you. One, you need comfort. You just do. We're in a time of total uncertainty and no one will blame you for taking comfort however you can. Two, we're talking about chocolate covered almonds, my friend. In the scheme of things, you could be doing a lot worse, chocolate covered almonds. You're doing all right.

Craig: What have you guys have been struggling with, exercise, diet, something else?

Michael: I feel like I have a few things. First of all, I have more or less not exercised at all since being home. I don't really know why. It's one of those things where maybe I'm fearful to go outside. I don't know exactly what's going on, but my activity has been pretty low. You bring up a good point about diet. That has been something where it's like because I can spend a few minutes and make eggs for breakfast every morning or be thoughtful about my lunch, I've been able to meal plan a little bit better, which has been good. You mentioned that.

The thing that gets me is basically now, right around five o'clock, my wife and I will open a bottle of wine and then I will, more or less, finish that, and then I will fall asleep with our two daughters, or when we put our two daughters to bed, which is sometime between 8:00 and 9:00, and then, unfortunately, instead of staying asleep all night, I'll wake up at about 11:00-ish, 11:30, after having like a solid two-hour nap, and then just have to watch TV or read until like two or three o'clock in the morning. My sleep cycle is all messed up because of this.

Dave: Wow. That's rough.

Michael: Yes. If either of you gets a text message from me at three o'clock in the morning, you'll know why.

Dave: That's what's up. Okay.

Michael: Yes, that's what's up. What do you got, Dave?

Dave: For me, actually, exercise has been fairly easy because we're out in the suburbs, so I can get out and run and I don't really see another-- I see other people, but it's very easy to run around them and all that kind of thing, and if wanted to run in the middle of the street, I could because very few people are on the road. The air quality in Los Angeles since it's been raining and because there are so many fewer cars on the road is beautiful. I don't think I understood how bad the air quality was until about a month ago.

Now, it is very, very nice. I'm running a lot, but I've just gone on Afrezza at the beginning of this year, which is the inhalable insulin, which is great. It's especially great for somebody who is active because it leaves your system very quickly. If I have lunch at 1:00, aside from my long-acting insulin, I don't have any insulin on board at 4:00 or 5:00 if I decide to go for a long run, which is great. With NovoLog or Humalog or whatever, same thing, there would still be enough of it in my system. There's something about that last hour of insulin activity, in the late afternoon, for whatever reason, that's always when I would go super low.

I couldn't really go for a run. Craig, you know me because you've run with me. I have a full like bandolier belt of gels and tabs and all that thing because I'm super paranoid. Now, I can do that very easily, and that's fine. The problem with Afrezza comes for me with dinner because I am cooking a lot. Afrezza has made me less fearful of pasta, which is great, but I'll cook a big pot, I'd do at sausage orzo, which is so good with mascarpone cheese and mushrooms and it's delicious, but it's pretty high fat. I take what I need. I take the amount of Afrezza that I need to take to get myself over the initial hump of carbs and all that.

Then, I frequently find that I wake up at 1:30 and I'm at like 250 because the fat content of the meal hits me later and I'm asleep and I have turned off my high alarms because I want to go to sleep. That's a thing that's typically I find that I rollover. Certainly, we'll do pizza once a week and that's a problem too because that will hit you in the middle of the night. That's my major issue, but I'm asleep during it so it's not that [crosstalk]

Craig: You're getting a full night's sleep.

Dave: Usually.

Craig: It would be probably better for you in the end. That's all the time we have for today. Lunch Break is a production of Beta Cell and it's produced by me, Craig Stubing. Thanks to everyone watching on Facebook and Twitch. We'll be doing episodes at noon Pacific every day this week. Tune in to watch live, or you can hear it on our podcast the next morning. Our website is betacellpodcast.com. There, you can find every episode of all the Beta Cell shows including our episodes with Dave to help you get through just staying at home if you need something else to listen to.

We are also a listener-supported show, which means that we rely on people like you to help pay our expenses, don't ask for money from corporations. You can do that by joining our fan club. JDRF, who we produce this with, is the leading global organization funding type 1 diabetes research. They need your help to do their important work of improving the lives of people with type 1. You can get involved much like we've been talking about doing with your local chapter through the YLC, by joining a walk team, or the bike team, or you can just donate at jdrf.org. Lastly, Dave and Michael, you've been at home.

Dave: Is this the post-credit scene that we're at now?

Craig: This is the post-credit scene. Recommend something that you've been reading, watching on Netflix, a movie. Give me something to do.

Michael: Read Esquire. There's one.

Dave: It's important.

Craig: We'll link to that.

Michael: Now is a good time, if you can manage it, to read one of the books that have been sitting around accumulating dust that you've always wanted to get to. I am reading the Count of Monte Cristo, which is actually good for this because he's in jail and he breaks out, and then he has this fabulous life full of adventure and everything else. That's about 600 pages, and I'm about halfway through it now. If you're looking for something to really consume a lot of time, the Count of Monte Cristo.

Dave: Wow that's great. I'm reading a book called The Nix, which is also a big thick book that has been sitting taunting me on my bookshelf for a really long time. Let's see. There is a network called Buzzr, B-U-Z-Z-R that is nothing but old game shows. I get it through the Pluto TV app. it's all game shows from the '70s, '80s, 90s. You got your Supermarket Sweep, you got your Password Plus. You don't have to use your brain at all. The fashions are incredible. When it's time for Match Game, everybody is visibly drunk and there's plumes of smoke coming from behind their little name tag thing because they're smoking a cigarette. It's really beautiful. It's beautiful.

Craig: Thank you, Dave. Thank you, Michael. Thank you, everyone, for watching. We will see you tomorrow. Go wash your hands.