Beta Cell #017: Dave Holmes Transcript

Full Episode

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


Dave: Should we set the scene?

Craig: Yes.

Dave: We're under blue lighting, we're sipping on some chilled martinis, some blue cheese olives.

[music]

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

[music]

Music has always been a big part of your life.

Dave: It is.

Craig: If you were to pick one song that describes your relationship with diabetes, could you think of one?

Dave: Wow, you put me on the spot there. No, I can't think of any songs at all. [laughs]. I guess I'll just talk about my relationship with it and maybe a song will naturally pop into my head.

Craig: Yes, we can come back to it later.

Dave: We might have to come back. It's a thing that I have that I wish I didn't, but I have found, especially since getting a correct diagnosis, I have found that there will always be surprises, there will always be bad days, but it is a thing that I can manage if I am mindful. If I think about what I'm doing before I do it, I will be fine. Knowing that has made my whole life better. At first, I was told that I was type 2 and I was put on medication that made me very sick and that did nothing.

No matter what I did with my body, with my diet, I couldn't get my sugars down. Then I went on insulin and that was great. There was a way to manage it, but I would get occasional lows, I couldn't run the way that I like to, I couldn't bike the way that I like to because I didn't know how to nourish myself and how to offset the exercise effects with food or with whatever chemical gels we're carrying around in our pockets or glucose tablets or whatever.

Now that I feel I have it together a little bit. Again, there will always be surprises, but I'm not as panicked by the surprises anymore. When they come, I know how to fix them. That makes me feel good. That good feeling, it moves on to other parts of my life. I found calm in a real-life life or death situation, so I'm able to be calmer about things that are less important. Things that used to really stress me out, I can breathe about.

Craig: In a way, getting more comfortable with type 1, getting some control, or at least knowing you can control it, has allowed you to control other parts of your life.

Dave: Yes. This is a thing that could kill me. If I do something wrong, I could legitimately die. I could pass out. I could be in a coma. I could do long term damage to my organs, but I don't, because I'm able to keep myself in a healthy range most of the time. Then, when there's something going on with work or when I'm trying to write something that's not coming to me, I no longer say, “I'm a terrible writer,” or “I'm terrible at what I do for a living.” It's just like, “This is a natural hurdle. I can jump over it. I'll be okay.”

Craig: Speaking of life or death situations, do you remember your first low or your first bad low blood sugar?

Dave: I do remember my first really bad low. I had maybe been on insulin for a couple of weeks, and I had my Dexcom for the first time and I was fascinated with that. I was constantly checking it. I was so delighted that it was always gray. I was in a good range. I remember one Saturday, it was a little after lunch, I had four units of NovoLog or whatever it was, and a sandwich and I stayed at a healthy range.

Then an hour later, I was like, “You know what, I'm going to go for a run.” because I just didn't think about it. I hadn't really talked with my diabetes educator or my endocrinologist about the fact that exercise, especially running, especially things that are long cardio-type situations can really make you drop. I went out for a run. I brought no money. I brought no glucose sources. I brought no gels. I brought no identification. I just got out and ran because I felt so good, and I just wanted to share it with the world.

I went out and I ran. I'm running away and I was maybe at 140 and then I was at 130, and then I was at 120. I was like, “This is great.” Then I was maybe a mile and a half from home, and the thing beeped at me. I had never heard this beep before, and it was a full rate alert. I had gone from 120 to 80, and I was a mile and a half from home.

Craig: Just like that in five minutes?

Dave: Just like that in five minutes, basically. It was just that cumulative. You know how it is, you get to a certain point when you run and then you drop. I knew a little bit about the fact that Dexcom was about 15 minutes behind what is real. I hear that I was dropping very quickly, and I didn't know anything else. I saw it and thought, “This is probably not good.” I didn't know that I was able to sprint a mile and a half and I got home.

By the time I got home, I was in the 50s somewhere, like low 50s and still dropping [chuckles]. Oh God, my poor boyfriend was taking a nap, and I came in and I was just shaky and sweaty, and sweaty anyway.

I just ran and I drunk a Gatorade and ate a billion tabs. I just waited and I was like, “This is how I'm going to die.” I just didn't think about it. I realized then a low feels almost exactly like a panic attack, which I was also having. I just remember thinking, “This is no joke.” I had never had a low in my life. I still hadn't slowed on board, there's still the exercise effect. Then 20 minutes later, I was at 300 because I ate all the glucose in all the world. After that, I was terrified. I would pull back on insulin a little bit. If I was having what I thought was a 30-gram meal, I would say, “Maybe it's 20,” and run a little high because I was so afraid of going low.

In the time since then, I have made it my aim not to live in them, but to get comfy in like the 60s and 70s just to know what they feel like, to know just exactly how much to take to lift myself out of it, and just not to panic, because the panic is worse than the thing, or feels worse than the thing.

Craig: There's some comfort in knowing that you can get out of it.

Dave: Yes, not knowing that is really terrifying. Especially when you're a grown-up. I think when you're a kid, you just don't get it. Probably when you were 13, and you were low, you were just like, “I'll be fine,” and you were fine because a kid thinks he's--

Craig: Invincible?

Dave: Yes. A man in his 40s has a strong sense of his mortality.

Craig: You remember everything. I don't remember my first low, I don't remember my first high. I barely remember getting diagnosed.

Dave: When you get older, you understand more about [laughs] how many ways you can die. You get checked for different types of things. Your friends start to go on status and have heart events and things like that. Death is a thing that is at your door at all times, so you think about it. A couple of weeks ago, I flew to St. Louis where I grew up to visit my family. My mom picked me up.

When I got off the plane, I guess I had over bolus for whatever it was that I ate on the plane. I got the little beep as we were landing, and then it was low and dropping a little bit and I still had active insulin. By the time I got to baggage claim where my 85-year-old mother was, I was legitimately in the 50s somewhere and still dropping, and showing the outward signs of a low, which was that I was really shaky, and a little sweaty, and a little out of it.

The way that my mom deals with any stress is just by talking, just talking about whatever like, “Look at that. There's the arch. You’re at number four. Your baggage claim number four, you've been there before.” Whatever. Just nonstop chatter. I was just throwing glucose tablets down my throat and trying not to freak her out any further. It's a thing you have to educate people about.

You have to say, “I'm going to be shaking for a minute. I might need a moment of silence, but just let me sit here for a minute. How's a bottle of juice?” Then I'll be fine in 10 minutes.

Craig: How did your mom react when you were diagnosed with type 1?

Dave: When I was diagnosed, my dad was in the later stages of myeloma, just a plasma cancer. He died of that about a year later. I didn't want to burden either of them with what I was going through. I didn't tell them anything about type 2. When I was misdiagnosed with that, I just didn't mention it because I felt like I'll be fine. There's nothing they really need to know about.

When you're type 1, you're going to have to excuse yourself and inject in the bathroom, you're going to have this weird thing where you test your blood sugar. There are accessories that you're going to need to explain to people.

Craig: It's a weird thing to hide. It’s hard to hide.

Dave: It's a difficult thing to hide. It's like I'm already the one from the family who moved to LA, so I don't want to be disappearing to the bathroom under mysterious circumstances because I think it

would be very easy for them to think that I'm on heavy drugs. When I told them, the way I framed it was that-- I told them the whole thing when I told them that I was type 1. The spin was I thought I had one thing that I was not successful at controlling. Now I know I have this other thing which I can control very easily, it's just going to, here are the steps, here are some things you're going to see me do. I didn't want to hang too much stuff on them. It was important that the PR spin be that I am on my way to being healthy. Because when I was diagnosed with type 1, this is never a thing I ever thought I would be, but I was too skinny.

I spent a few months with blood sugars in the three hundreds, and I couldn't do anything about it and so I was pissing out all of my calories. I had all of the outward symptoms of type 1, to a point where I was like, “I'm got. I need to put on weight,” and I could. I know that they noticed that. It was important that I tell them, "I was a little bit on the wrong path medically for a while and now I'm on the correct path, and here's what this thing is." They still don't-- My mom and the rest of the family, they don't a hundred percent get it, you get a lot of questions like what's a carbohydrate? It's like, “I don't-- I can tell you what my ratio is of grams of carbohydrate, two units of insulin, but what actually a carbohydrate is, I don't know, I'm going to have to send you to Wikipedia."

Craig: I guess it's different for you because when you're diagnosed as a kid, your parents are the ones looking out for you.

Dave: Sure.

Craig: But then later in life, when the children become the caretakers. You don't want to feel like your mom still takes care of you. Obviously, burden her with all of that. It's an interesting thing to be diagnosed with type 1 later in life.

Dave: It is. It definitely is. Especially since you have to navigate this whole dumb thing of nobody understanding which diabetes is which. You have to deal with a lot of like, “Okay, you're an adult, so it must be type 2.” Add to that, in my 20s and 30s, I was overweight. In my 20s and early 30s, I didn't have to shop at special stores for my clothing, but I was definitely overweight. Then to 10 years after losing weight, to find out that I am diabetic, my tendency is to say that I brought it on myself, or that it was because of my nutritional choices when I was 23, or whatever. That is also the rest of the world's view as well.

You did this to yourself a little bit. Which I don't think it's true. I know type 2s with abs and shoulders, and I know people who are super big and drink big gulps and don't get any exercise and are perfectly healthy as far as I know.

Craig: When you were diagnosed as type 2, did you feel that guilt? Did you feel like it was your fault? Or how did you feel?

Dave: I definitely felt that guilt, for sure.

Craig: How old were you?

Dave: It was 2009, so I was 38. It was literally five days after the New York City Marathon. My A1C was high. I don't remember what it was, but it was high. My doctor was like, “You absolutely, a hundred percent, have type 2 diabetes.” I remember him saying that, “You absolutely, positively 100% have this diagnosis.” I thought that does not make sense.

Craig: You had just run a marathon.

Dave: I had literally just run a marathon. I'd been doing triathlons for, God, like six or seven years by that point. There was a period in my life when I was definitely overweight, but even during that period, I was very active. I ran a ton, I played tennis, I had good endurance, I was not a heavy guy. Also, my diet wasn't great, but I didn't do a lot of the sugary beverages and things that really spike and crater you and all that. It didn't make sense. My doctor put me in touch with a nutritionist and I said all this stuff to her, I was like, “I'm really active. I know that I could stand to lose some weight, but I'm like, “This diagnosis really does not make sense to me.”

Especially since after moving to LA in 2002, my diet had gotten really good. I was eating a lot of fresh vegetables, cooking at home and all that kind of stuff. She said, “Well, we're often the result of choices we made when we were much younger,” which there's some truth to that. It also made me feel guilty. It also wasn't the kind of thing I wanted to tell a lot of people because you make jokes about diabetes. My Catholic guilt kept me from mentioning to too many people.

Craig: How long were you misdiagnosed with type 2 before you're diagnosed as type 1? How did that make you feel?

Dave: I was diagnosed with type 2 at the end of 2009. Let's see, at the end of 2015 is when I was just constantly in the bathroom, and constantly drinking water and losing weight way more quickly than I could put it back on. Yes, I guess six years, something like that.

Craig: Did you suspect that the type 2 diagnoses was wrong?

Dave: Yes, I did. I really suspected it was wrong because nothing was helping, Metformin wasn't helping. I kept waking up at higher and higher levels. I would always test first thing in the morning and would be like 120, then it would just keep creeping up and up and up, and then it was 180 and then it was around 200. Then in 2015, I would wake up in the two hundreds and then up to 300. After having a kale salad for dinner, I would wake up with these crazy high levels and I was losing weight, and it just didn't make sense to me.

In my head, I was like, “I might be type 1.” I remember saying to my doctor at a physical, “I know that I'm on Metformin and I'm probably type 2, but can we just run the tests and just make a hundred percent sure?”

Craig: You knew there were tests?

Dave: I knew there were tests. He was like, “No, I don't think it's worth it. You were 38 or whatever I was. It’s type 2,” just with certainty. It didn't make sense, but a doctor is a doctor and I'm not one. That was that. I remember really vividly, I had dinner with a friend and I had the most carb-less dinner ever. I still couldn't come down. I thought something is definitely wrong. I remember I changed-- the end of that year is when I didn't make the SAG minimum to get SAG Insurance because I’d shifted my emphasis to writing and I wasn't doing much on-air stuff. My SAG earnings were low, and they weren't enough to meet the minimum for insurance coverage, so I was going to start having to do it on my own.

At the end of 2015, I started looking for plans where I could-- I forget what they're called, but it's a certain kind of plan where you can take yourself to a specialist instead of having to be referred to a specialist, because I got the feeling that my GP would not refer me, just he would be like, “Just trust me. It's not working, take more.” I got whatever plan that is and January one, I was like, “Okay, I'm going to find myself an endocrinologist, I'm going to go in, I'm going to get this whole battery of tests”, and I did.

I think the first week, they were all back in their office. I went in Dr. Freebies' office, and I said, “I am told I am type 2, it doesn't make a lot of sense to me. Can we just run the full battery of tests?” He did and it’s type 1. I was like, “Okay, good. Now we're getting somewhere. Now I can actually take an active role.

Craig: Did that remove the guilt?

Dave: A little bit. You know what? It did. It did remove the guilt. The guilt will always be there because I'm Catholic and there's nothing I can do about it. It removed some of the guilt because it's a thing that I was going to present with at some point in my life or another and now it's something that I can, through work and conscientiousness, I can take care of myself. I was very excited because Metformin had made me so sick. I would vomit so hard and so unpredictably, just twice a month, and never at any predictable time. It was never like after I eat this thing I throw up or at this time of night I throw up. I would just find myself with the worst nausea I'd ever felt in my entire life.

Just like call an ambulance level nausea. Bad news. I'm glad that's over. I haven't thrown up in a couple of years and I don't miss it.

Craig: When do you reach out and find other people with type 1 and why?

Dave: First of all, when my doctor, when my endocrinologist said, “We're putting you on insulin”, I was like, “Terrific. Great. Now I've got a thing that I can do.” I couldn't wait to learn about all the different kinds, all the different dosages and my ratio and all that kind of thing. It was like, “There's data that I can throw myself into

that makes me feel good." Then my diabetes educator at the time, she said, "You should go--" She called it diabatribe but it's diatribe.org I think. It's a website where there's news and there's information, there's community and whatever. She turned me on to be on type 1 but she also said, go to meetup.com and find a meeting for adult type 1s.

I was like, "I'm going to not do that but sure." At the time, I was like, "This is the thing-- Now that I have data and now that I have stuff that I can research, this is fine. This is a thing I can take care and control.

Craig: You've got under control.

Dave: Got under control. Then I had that first low, that was absolutely terrifying. It hit me like, this is not going to be super easy. It makes sense for me to talk to other type 1 people just to make it feel normal.

Craig: Were you looking for normalcy or were you looking for just answers like, how do I exercise? How do I do this?

Dave: Yes. I was looking for it to be a part of my life. When I see people who can just incorporate it into their lives, and they can talk about it for an hour, or they can not talk about it for a week. It's a part of their lives that they just do casually, on their own, it's effortless, you just pull up the thing, boom, boom, give it a shot, whatever. They're fine. Again, nobody's ever completely fine. There are curveballs and whatever. That to me is very soothing when I just see people going about their business in what I perceive as a regular way that makes me feel good.

Also, I remember going to that first meetup. I remember sitting there in my car and feeling very much the same way as when I went to a gay bar for the first time. Because at that time, of course, I wanted to meet people. I was young, and I wanted to date and hook up and all that, but I also just wanted to be around people who were like me and just see the spectrum of human behavior. I was less good about being in gay bars, whatever. That's a whole other situation. You're like, you see people that you don't relate to and you get mad, and it's like, "Oh, I'm not like that. I hate this. This music is-- They're playing too much disco, I can't stand it," whatever.

It's all tied in with self-hatred, and whatever. This was something that really was divorced from self-hatred, whatever. I'd never been told that type 1 diabetics are sinful or anything, it was just pure information. I was just going in to be around people like me, to learn how to live the rest of my life this way. It was just like, "I'm just going to go, and it doesn't matter if I don't become great friends with all these people." It's just we're there to get information and to maybe possibly, you could say something that could resonate with somebody else, or whatever.

I went in, and there was a Craig Stubing there. There were a few other people, four whom diabetes it's a part of your life and it's something that you advocate about, you speak about and you do good work and all that. There were people who were diagnosed more recently than I was. There was a woman there who had just found out a month ago, and she also was an adult. I think somebody had I will bolus for bagels or something t-shirt and I was like, "Okay, I'll probably won't ever be the kind of person who wears that sort of t-shirt," but I don't have to be, that's fine. I just remember us all sitting there and talking and sharing information and it felt really good.

I remember feeling my shoulders getting out of my ears and down to where shoulder should be. It just felt like, "I got a community, this is life. I'm going to live."

Craig: Then I remember you emailing me that next week asking me about exercise. I don't remember what it was, it was something about like eating an apple before you run.

Dave: I think, my question was something like, how do I exercise? What can I eat? Honestly, at the beginning you have these basic questions like literally, how do I not die?

Craig: Nobody tells you.

Dave: Nobody tells you. You have to figure it out on your own. I still figured it out, largely on my own through my own experiences and stuff. It is so helpful to have other people who've been through it and are alive. That is, to me, the genius of type one run, not to blow smoke, but going for a long run with people who have been at this longer than you and have been running for a long, long time and are alive people. That's really so powerful. Because the fear is that you're going to die or you're going to hurt yourself somehow.

To be around people who are just like, "It's fine." You'd have a low around, people are like, "Here, just let's read stuff for two seconds, have two tablets, chill out for a minute, then we'll keep going," is so powerful.

Craig: It makes it feel okay to not be okay.

Dave: Right.

Craig: Because you'll be okay, again, if you just do these things.

Dave: Yes, just the other day I was out for a run. It was late afternoon. I didn't have any active insulin. I was at 200-ish or something and I thought, "Okay, well, I have been meaning to run anyway, I'll go for a run. Two miles into it, my Dexcom says I'm at 2 hours or going down. I was like, "Okay, well, that's scary." A couple of years ago, I probably would have had a massive panic attack, that wouldn't have helped anything but I had all the stuff that I needed to have on me. I had a couple of tabs, I had a gel, and I was fine. I knew that I was going to be fine.

I knew that I was going to be fine because I have spent time around people who have diabetes, and who run and who are fine. It's not always going to be perfect and you're going to have some sketchy moments but if you do the right things, you're going to be fine. I also know that I can call anybody, we live in LA, so it would take you an hour to get to me. I know that there are people I can call or text and just say, "I'm at 50 and I don't know what to do," and they'll guide me through it.

Craig: Has your relationship with exercise changed? That seems like you ran a marathon, right before you're diagnosed with type 2; exercising a lot to try and keep your blood sugar's down didn't happen, when on insulin, getting all these lows, learning how to exercise again, was it important to you to be able to get back into running in triathlons before? Does that mean something to you?

Dave: Yes. It's, A, I love exercise but, B, now it's personal. It's a fuck you kind of. To get out on the road, or to get on a bike or to get in a pool is like, "I'm going to do this, and nothing's going to stop me."

Craig: Despite diabetes.

Dave: Despite diabetes. I have the tools to survive an eight-mile run, so that's what I'm going to do. It feels really nice. It just feels really nice. Where before, a long run was just a thing to do to pass the time or whatever. Now it's like, it feels like an act of defiance like, I'm going to get through it.

Craig: I get that. No, I get that. It's like, every time you're doing it, you're proving to yourself that you can do it.

Dave: Right.

Craig: That's empowering. That's why we run together.

Dave: Yes. It is such a nice feeling just to get around other people who get it. It just makes sense. It makes the general level of anxiety just drops. Anxiety is not going to help anybody.

Craig: You follow me on Dexcom.

Dave: Yes, I do.

Craig: It's been a while. I don't know at what point we decided to follow each other. What did that bring to you?

Dave: It's crazy to me, to have this technology where we can follow each other and it's you and two other friends. At any time of the day or night, I can check in with them and know where they are and they can check in with me and know where I am. There's something great about just normalizing this whole thing, just having a community where we've got each other's backs. It's also nice, it's probably not nice for you, but it's nice when I get a little update and then I check and it says Craig's low, which means you're so low that your Dexcom can't even contemplate how low you are. You're that low. I check in with you and you're fine.

You're actually on a bike somewhere, doing your exercising. You're just, tell them, "I'm going to be fine. I had a couple of tabs, I'm going to be fine." Then I watch and you're fine. It's just more evidence that there will be highs, there will be lows, literally, there will be curveballs but it will be fine. If you know what you're doing, you will eventually be fine.

Craig: You last ran the New York Marathon days before you were diagnosed with Type 2. Now you're going to be running it again for the first time since; is that significant to you? Have you thought about the weight of that?

Dave: I have. I really have. It definitely feels like a sequel. There's a new villain in town who's bigger than the first one but I'm going to take him down. It feels like a full circle kind of a thing. I'm really ready for it

and the fact that I am doing it with a bunch of other type 1 people. I don't think that we are necessarily going to run as a pack but we'll be able to communicate with each other. We'll be there with each other at the starting line, at the finish line, we'll be going through the whole training process together on some level or another even though we are all in different cities.

Doing it as a community, it's more significant than just crossing the finish line. It's doing it, it's building community, it's showing the rest of the world that these things can be done. I hope eradicating some of the ignorance about what diabetes is and what you can and cannot do.

Craig: It's about two years ago when we met and you were asking me how do I exercise with type one and now you're the captain of Beyond Type 1 team running a marathon; that's a big change in two years.

Dave: It really is but there's not a lot of time to lose, if I'm going to get comfortable, I might as well get busy with it. I've come so far in the last year, largely because of type one run. Just getting out and doing these things and watching my levels. Just learning from experience what works and what doesn't, has been so significant. Now I'm afraid of losing toenails and having my nipples bleed and all the things that you worry about when you're doing something like this that a human being should not do because it's so stupid. I'm worried about those things but I'm not worried about dropping dead. I know that we are going to be fine, I know I'm going to be fine.

Craig: Thinking about meeting other people with type 1 and this sort of idea of learning how do I live. Does that make you think of any songs?

Dave: We are back to the song, I wasn't thinking about it, I might have. It doesn't directly relate but it's one of my favorite songs of all time and it's from the Show Company it's a Stephen Sondheim show, basically autobiographical. It's about this guy who at the time is turning 30, and this was in the '60s when turning 30 was a huge big deal. He is single and so the whole show is like he's married friend is trying to set him up and try to push him in certain directions and all that.

He is resisting, he wants to keep living the life that he wants, that's just kind of his, where he doesn't have to answer to anybody and it all builds to this crescendo at the end of the show and he sings a song called being alive. He lists all of the things that are annoying about relationships like someone to sit in your chair and someone to ruin your sleep and all that. Then there's this change in the middle of it and then he is saying, "Somebody is sitting in my chair, somebody ruined my sleep." He understands the value of the things that are annoying and of thinking of somebody other than himself. Thinking of all the complications and thinking of other people, that is what is being alive.

The song is called being alive. He has this revelation at the end of the show that it is thinking past yourself that is what makes life worthwhile and it's not just mindless pursuit of pleasure the way that he had been thinking. It's a little bit like that; it's all of these things like being super conscious of every gram of everything that I put into my body. That to me was always what health foods store people want, yoga women with dangling earrings and Birkenstocks; that was there. Now that has to be my world, that is how I am going to stay alive. It's good, it's been good for me and the community that sprung up around has been really good for me.

It's a thing that I initially saw as a massive pain and it is but it's also-- it's good and I take an active role in my own heath which is nice.

[music]

Craig: Beta Cell is 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 podcast, to get new episodes delivered automatically to you. If you love Beta Cell and our new show Out of Range which-- If you don't, I'm surprised you've listened all the way to the credits. You can also support us financially at any amount at our Patreon page. Visit betacellpodcast.com/support, for more information. We even have some awesome Beta Cell swag to send you as thanks. Dave has an excellent autobiography titled Party of One that you can find wherever fine books are sold.

For more information about Type One Run visit typeonerun.org, if you want to donate to the Beyond Type 1 New York City marathon team, you can find them at beyondtype1.org.

I'm Craig Stubing and this is Beta Cell.