This is the third and final installment of a series of interviews with theatremakers who have chronic illnesses. As a theatremaker with MS, my hope is that these stories will inspire all of us, and provide new approaches to resiliency for those of us living with a chronic illness. In speaking with great playwright and performer Robbie McCauley—who has diabetes—we explored how telling our stories can help us work through our denial and resistance. —Sara Brookner

Sara Brookner: It’s great to reconnect since I coordinated all the post-shows for your one-woman show Sugar back in 2012 at ArtsEmerson. How did you come to decide, both personally and professionally, to be open about having diabetes?

Robbie McCauley: It was actually suggested to me by a colleague knowing that I was interested in what I call “personal bigger stories”—stories that have affected my life, but address a bigger topic. I started out with many more charged ideas—war, racism... I’m always interested in those larger topics, and how they affect my physical story, my personal story. Years ago, a friend who was also a theatre person said to me, “Why don’t you write about diabetes?” And my first response was, “Eh, I don’t wanna do that.” As time went on, as I continued teaching and exploring the idea of the personal bigger story, I was having many crises with the diabetes, and felt that it was time to talk about it. I feel that if I’m resisting something, it must be something I need to attend to. I tell my students, if you’re resisting, then go towards it. And I thought, “I’m doing the same thing.”

Sara: I find that idea so powerful. It’s a part of the reason why I’m doing this series—because I resisted truly acknowledging or being open about having MS.

Robbie: Denial. I mentioned that in Sugar. Denial is so much a part of these conditions—especially if you’re in theatre, because you want to be perfect.

I think that I’ve always been a “good diabetic.” I follow all the rules as much as I can, but it’s a very difficult thing to manage. In fact, a piece done on 29 August 2017 at Dixon Place, Colloquy of the Fifth Species, included “The Mystery of Somogyi”, a work in progress—a theatrical conversation—with Joanie Fritz Zosike, another performance artist in New York. We’ve known each other for years, and I think we exchanged early on that we both have Type One Diabetes. When she found out about my piece, we started having conversations, and finally said “Okay, let’s make this into a performance of straight theatre.”

two women sitting
Sally's Rape. Photo by Demetria Royals. 

Sara: Could you share a little about how you learned about your diagnosis, and what was going on in your life at the time?

Robbie: Type One Diabetes would be labeled as juvenile diabetes because it often affects children. But Type One means that there’s some genetic component to it. I had symptoms early on, but I had no idea, and my family had no idea. There was nothing present in our immediate or extended family with diabetes back in that time. It came out later with younger cousins. They had Type Two. They got it when they were older. And so as a kid, I had symptoms up and down, and all around, and never knew what it was until I got to college. I got a test and the doctor asked me if it was in my family and I said, “No.” So that was it. The health care was sporadic when I was younger, and I didn’t really get it diagnosed until I was twenty, but it was Type One. I tell all these stories in Sugar. I tell stories about class and race, and how hard it was to follow through medically. My family was a regular working class family, but we had all the contingencies and resistances to health.

Sara: So getting diagnosed at twenty means that your entire working life in theatre, you’ve known about this condition and had to work knowing that you also have to be managing it well. How has that influenced your process?

Robbie: For a while I kept it way undercover. I took my meds. I’d go in the bathroom and barely mentioned it to anyone. I would always mention it to stage managers. I just think stage managers are the best people in the world. Many stage managers knew people in their families with diabetes, or they’d studied up on it for my sake. They had worked with other actors who had it, so that care was really amazing. That was mainly how I managed it. But there were some things that didn’t work in terms of getting work done, especially performing, but I managed pretty well with the help of stage managers and the knowledge I had finally after I was diagnosed.

Sara: You’ll be performing Sugar again in February. But given that not everyone who reads this piece will have seen Sugar, do you want to share one of your stories from the play?

Robbie: I was doing the Adrienne Kennedy play A Movie Star Has to Star in Black and White at the Public Theater, with my favorite playwright, my favorite role, my favorite director, Joseph Chaikin. I went home in the middle of the day, ate a yogurt, and went to sleep. The next thing I knew, the three actors from the show were at my apartment with an ambulance. They called the ambulance. I missed the show, which was like death! But they were kind to me. And the line in Sugar goes, “The theatre was packed that night and the film director Peter Bogdanovich was there, but the show was cancelled.” It went on after, it was a short run, but Peter Bogdanovich did not return. It was a huge disappointment.

You get wake up calls. I had to be stringent, you know—eat more than a yogurt during the day, watch out if I was taking a nap during the day—all of those things. Denial was also a part of trying to live normally. But I have to be vigilant. And my daughter, a notable musician now, grew up with me doing theatre, and has been vigilant towards me. You would think a grown up person with some intelligence would know how to manage. Working with Joanie, who has the same kinds of problems, inspired me to start doing story circles—which is the process that I use in teaching and directing—around diabetes. I started to find out the problems and contingencies are everywhere with people, and so exchanging stories helps to know that you’re not alone and you can exchange best practices with others. Joanie and I are now thinking of starting those again.

Sara: That’s great. I love that you’re creating space for people who feel that they can’t talk about their chronic illnesses to know that they have community. It’s so powerful.

Robbie: I’ve known many people who have conditions and the same aspects come up. They don’t talk about it, they have a headache, and go on anyways, because that’s what we do.

Sara: Having a support network is so crucial. You can know it’s important to take care of yourself, but it’s also helpful to have people who can be your reminder for the days when life is getting at you. What advice do you have for someone in theatre, maybe who’s newly diagnosed, or just new to trying to make this work? What do you wish you had known that you feel like you learned along the way?

Robbie: That’s a great question. I think you follow your dreams, your passion, your work—do not allow the condition to stop you. And with that comes the responsibility to have all of the knowledge and recognize that this particular condition is ongoing, so far. I pray—we all pray for cures. But you learn to manage the insulin process and recognize that the body changes as you change. I’m older now, and the body changes, so what worked specifically at one point in life may not work as you get older.

Robbie McCauley holding sugar cane on her back
Robbie McCauley in ArtsEmerson's production of Sugar. Photo by Paul Marotta, Perfect Bokeh Photography.

Sara: Yeah, and also the methods for dealing with these things are constantly changing.

Robbie: Absolutely. I’m really glad you mentioned that.

Sara: I have a strong memory of one of the post-shows of Sugar. Debra Wise of Underground Railway was there, and I remember her saying, “Why don’t you want to get your own pump?!” And pulling up her own pump, and saying, “It’s so great! Please get one!”

Robbie: I’m now using a monitor, not a pump. It’s amazing because I can know what my blood sugar is any time of day. And that’s a miracle! But how resistant I was. The pump is harder for me, but I may get one eventually.

Sara: It’s so funny because I totally understand why you would be resistant to that. For four years I was doing a daily injection. And then they came out with a new medication that was three times a week. You would think, “Great! Of course I want to switch to this,” but it took me awhile because the daily injections were working. And you don’t want to stop what’s working.

I’m curious, does it feel more like a gift or a curse, and how do you navigate those feelings? Do they change?

Robbie: Well, it’s definitely a curse. I would rather not have it. But, it has become the gift in terms of being able to give, to tell stories, to help other people, reveal in order to help manage. It’s a gift that emerged.

Sara: Yeah...there are gifts within the curse.

Robbie: Yes, the contradiction is something that we are all working with in theatre. I compare diabetes to love—“It can rip you up and tear you down at the same time, but we’re all attracted to sugar.”

Sara: Is there anything else that you would like to share for those that will be reading this?

Robbie: I’m impressed with how many people in the field now are talking about who they are in terms of wellness and management, and how the work goes on.

Sara: There was a stigma for many years.

Robbie: Yes, and that’s part of it. That was part of the denial, I think. The idea of being not well was not acceptable. And yet I think of people who were open and honest... Mary Tyler Moore was an inspiration for me—I mean I adored her anyways—but when I found out she also had Type One Diabetes, she was a big inspiration. So I think people who were open were always giving that gift.

Sara: Yeah, it’s a gift to others to show that you can really make this work and have a good life.

Robbie: That’s true. Stay with it. Stay at it.