Lisa Hepner

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 one diabetes. I'm Craig Stubing.

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Craig: It's no secret that living with type one diabetes changes you. There are the external signs that other people can see. Testing your blood sugar, carrying glucose, wearing the pump. Then, there are the internal signs that only you can see. Always worrying if you took the right amount of insulin. Being scared that you won't wake up from a low in the middle of the night. Fearing that you won't live as long because of this disease.

It makes sense that with all this negativity, we'd want to minimize how much diabetes is in our day to day lives, but some people take the opposite approach. They take on projects that surround themselves with diabetes all the time, hoping that they can make a difference to our day to day lives with it. Lisa Hepner is one of those people, but she wasn't always that way. Her journey to directing the documentary, The Human Trial, began when she was studying abroad at the University of Edinburgh in 1991.

Lisa: I was feeling a little under the weather before I left in September to go to Scotland, and I had no idea what it was. I was like, "Oh, I'm just excited about going away. I'm tired. I'm packing." Then, when I got to the university, I was feeling really sluggish. I used to be a really good runner and I couldn't even make it up the hill. I was drinking like a liter of water a night, but of course, I had no idea what that meant. Thankfully, I got screened at the university health center where they discovered that I had sugar in my urine, and it was a screening that you had to do to get signed up for health care.

Craig: You didn't even go to the doctor, "I'm feeling sick, check this"? It was just your general check?

Lisa: Yes, in order to get my free health care, I had to go and do this really quick screening at the healthcare center and that's where they found that I have sugar in my urine. They pulled me aside and they told me that and I had no idea. I literally thought it was because I was drinking too much Guiness and staying out way too late. They said to me, "No, no, no, this could be diabetes. Come back in two weeks for a blood test." I went into the clinic, no one else was there, it seemed. It was just me. I went by myself.

There I was, got my diagnosis from a nurse behind a counter when she put diabetes sticker on my chart. I'm like, "Welcome to the world of diabetes," and I have no idea what this disease is. I knew it was bad but then my doctor, Dr. Hepburn in Scotland said, "You're athletic. Basically, you're in good shape. You'll be fine. Just don't eat birthday cake. By the way, it's the leading cause of amputation in Britain."

He just said it by the way. That was it. It was a really interesting way of getting diagnosed because I was on my own at 21, no parents, no friends outside of my student house. No typical support system. Not being hospitalized was good and bad because I didn't think it was going to hold me back because I wasn't ever in the hospital, but then it also didn't teach me how serious it was.

Craig: How did you get your education on how to deal with type one?

Lisa: What I did was I read voraciously. I was reading books on magazines, talking to people. I knew I immediately had to find someone who was like me who had it. I had to find that connection so I could relate to someone and look at them and say, "Hey, I can still be 21 and I can still live a full life and a long life."

Craig: Was there anyone in school with you that you knew who had type one?

Lisa: There was one, Colin. He was a nice guy, but I was really looking for someone more like a doppelganger to me who was really into sports, energetic, outgoing, and the like. I found those peoples through the International Diabetes Athletes Association started by Paula Harper. I joined that organization, and my first trip was to Barcelona where we ran a 10k, did a bike race, and had a lot of sangria [laughs].

Craig: Going from just Colin-

Lisa: Just Colin [laughs].

Craig: -to now all of these athletes. Do you know how many people there were?

Lisa: Yes, I would say 500 people.

Craig: Really?

Lisa: It was a very moving experience. It was inspiring because when I ran the 10K, I met this man who was German. In World War Two, he had to ration his insulin. He was on a quarter of what he should have been on during the war, or maybe a half and he survived, and here he was running a 10K in 1991. That blew me away. That really blew me away. Then, it was cathartic because my friend, Kate, from the UK, we really bonded, we went to the Gaudi Cathedral, and we drank too much sangria, but we both just let go and we both mourned the loss of our freedom. It was really important because I didn't have a support group, and nor did she. The English tend to be a little more buttoned-up and stoic.

We always remember that moment of crying over a sangria, having just visited the Gaudi Cathedral. Cathartic, inspiring, and scary because I met people who had type one for a very long time, and I saw the atrophy on their bellies with the pumps, and these pumps were old school. Then, I saw people go low, have major hypos because of all the exercise people were doing, and I was still honeymooning. That opened my eyes. It opened my eyes to what it could be like.

Craig: Then, when you left Barcelona, did you feel like you had a different outlook on diabetes than when you went in?

Lisa: It was a more educated outlook. My outlook changed more dramatically when I hang out with a fellow Canadian, Janet Waterston O'Leary, who I visited in London. I remember walking down a market street and she said to me, "You know, type one is debilitating." I had just won that 10K in Barcelona and I was feeling like, "I can do this." Then, when I saw this woman who I really respected and liked, who had had type one since she was 11 and she was in her late early 30s, that was really profound. She apologized to me and she said, "Lisa, I saw your face. I should never have said that." I was like, "You know what? That's the truth."

Craig: Do you still think that?

Lisa: Absolutely. I do. I think it would be disingenuous to say otherwise. Right now, I'm thinking I'm going low. I'm looking for my words to make sure I'm not fumbling them, and that's just in the short term. That's just like immediately right now as I'm talking to you. I have comorbidity. Do you know what I mean? It's not a long term complication, it's just a comorbidity of living with type one for 27 years.

I have frozen shoulder. In my left shoulder, I had frozen shoulder operated on. In my right shoulder, I have carpal tunnel, trigger finger. I'm concerned about my longevity. I had kids later in life. I'm 48 years old and I have a three and a half-year-old at home. I think very deeply about the 10 to 12 years shorter lifespan and how that will impact my ability to being a mom. Will I be affected by some of the brain damage associated with hypos? I'll be honest, I've seen that with people who've had type one for a very long time.

Even now, sometimes, not now but just in present tense, if I forget something, I think to myself, "Oh my gosh, is this a diabetes thing?" [laughs] "Is my brain atrophying because of too many lows?" Yes, I don't want to be doom and gloom about it, I just want to be honest. Do I think it's debilitating? Yes, I do.

Craig: You were a producer in Hollywood, right?

Lisa: Yes, I was a producer more in New York.

Craig: Okay.

Lisa: I worked my way up from being a production assistant.

Craig: The film industry is hectic for people who have never been on a film set before. It's not, "You know, I'm just hanging out," right? Especially if you're producing, you're running around a lot. How did that impact that diabetes life balance?

Lisa: Yes, that was hard. I really, really like what I do, so I was in a good mood much of the time which helped me to weather the struggle of looking after my type one. There are really long hours and it's very stressful, stressful in a good way, I suppose, if you like it, but it's action-packed. There was a time I remember I was shooting this, I was actually directing this surf video and I was in Costa Rica. I was wondering like, "Why is my sugar so high? What's going on?" I didn't want anyone to know.

I didn't want anyone to know to think that I was somehow less capable of directing this because of this disease. I didn't even share it with my good friend who was my producing partner, and I'm a pretty open person, but I think at that point, I really didn't want to be looked at as someone who couldn't pull their weight, be competitive, and make it because it's a very competitive business.

Craig: Where you like that for the whole time you were in this industry?

Lisa: I was always open about it, but if I was on a film crew and they weren't my closest friends, I kept it to myself.

Craig: Need to know basis.

Lisa: It was a need to know basis, and it usually came up at crew meals.

Craig: They'd see you test?

Lisa: Yes. This is how I put it. I never hid the fact I had type one. I hid the troubles I was having with type one, meaning that when my sugar was super high and I was groggy and tired, I hid that. I did not want anyone to judge me because my blood sugar was too high and I wasn't thinking clearly. I didn't want anyone to know. They knew I had type one, but I didn't tell them really what that meant or how it affected me in the moment.

Craig: Was there a point when this changed, do you think, that you started to become more open about what was going on?

Lisa: Yes, I do. It was when I met my husband in New York. He saw firsthand how difficult it could be and how I wake up in the morning sometimes with a hypo, with sweat on the sheets and just feeling like I'd been run over by a truck, and he saw that. I was able to share more of that experience with him, and he enabled me to open up about it. In fact, I would never be making this film, The Human Trial, without Guy.

I was very focused on just making it in the film business. I didn't want to make a film about diabetes. I didn't want it to be like my disease film, and I didn't want to define myself by that, but then, Guy, being a cinematographer and a filmmaker, saw me struggling with it and thought, "We've got to do something. People don't get this disease." He said, "I didn't get the disease until I lived with you, so let's do something," [unintelligible 00:11:49] a few years that led us to this film to do together. Yes, I would say he was a big influence on opening me up about type one.

Craig: This is a good point to say what the film is about.

Lisa: The Human Trial is following clinical trial in real-time that might be a cure for type one diabetes using embryonic STEM cells. It's a very ambitious trial where this company we're following, this biotech company, ViaCyte, they have created this polymer device which is, think of it as a tea bag in which they've put these programmed embryonic STEM cells into this teabag, and those progenitor cells will develop into islet cells.

This film is interesting because we're following the researchers on their quest to cure type one, and we've been following them since 2014, but we're also embedding ourselves with the patients in the clinical trial. That's rare to have the patient perspective and the researcher perspective. Then, we tell the backstory of what it took to get to this clinical trial through the story of the researchers. That way, we get a full picture of why there hasn't been a cure and what real hopes there are for one.

Craig: Since you started this human trial journey in 2012, do you think your relationship with your diabetes has changed?

Lisa: I like how you frame things in terms of a relationship with diabetes. It's not just you're living with this disease, but what is your relationship like, because it is such a demanding relationship. A friend of mine said it's like a house guest that won't ever leave.

Craig: It's a give and take. Diabetes can only do based on what you do or don't do, and sometimes, what you do is dependent on what diabetes gives you.

Lisa: When I started this film, for real, in 2011, we did a Kickstarter campaign. I was in a position of saying, "Yes, I'm that PWD." I was like, "I didn't even know what that acronym meant, person with diabetes." I realized I was trusting myself into the spotlight of being a type one with a message. It was a little uncomfortable at first. Then, I just thought, put my ego aside and wanting to just truck forward as a person in the 20th century and put that all aside and remember that you are the voice in the mouthpiece for a lot of less fortunate people.

I'm driven by idealism, what can I say? That's what really propelled me to say, "Yes, I'm going to put myself out there," and I really don't have any regrets. I think we're on the cusp of editing a really, really good film. I'm really excited about it. I'm thrilled to think that it's going to play festivals and galvanize the community in a way it hasn't been galvanized before.

Craig: Before you got into the film, you were worried about being defined by type one?

Lisa: Right.

Craig: Do you think you are, or is that something you don't even worry about now?

Lisa: I don't think I am. I think I'm okay about that. How could you not be defined by a disease that is so omnipresent in your life? I don't let it define me by saying, "Give me an extra hour of sleep in the morning because I had a hypo in the night." That's my Norwegian stoicism, for better or for worse, but I don't mind being defined by it if I can be the conduit to better understanding of that disease. I'm willing to take that stage and do it and be that voice.

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Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing, and our theme music is by Purple Glitter. If you want to learn more about The Human Trial, visit them at thehumantrial.com, and you can follow them on Facebook, Instagram, and Twitter. Be sure to subscribe to Beta Cell wherever you listen to podcast to get all of our shows downloaded onto your listening device as soon as they're available. If you love Beta Cell, you can support us on Patreon. There, you can get access to our exclusive supporter-only show, Out of Range After Dark.

I'm Craig Stubing and this is Beta Cell.

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