Jessie Bear: Letting Go of Self-Hate After Type 1 Diabetes

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Jessie Bear is a writer, playwright and producer based out of New York City. With director Erin Mee, she is co-founder and co-artistic director of This is Not A Theatre Company, and is the playwright for all the company’s premieres, including the critically acclaimed “Ferry Play” (2015), “Readymade Cabaret” (2015) and  “A Serious Banquet” (2014). She is the writer, producer and star of “Type What Now,” inspired by her popular blog by the same name which chronicles her experience with diabetes. Type What Now premiered to a sold-out run at the 2015 New York International Fringe Festival, where it was named a FringeFAVE and a Theatre Is Easy Best Bet.

Knowing you for a few years, your self-care routine has changed a lot for obvious reasons. What was your self-care like prior to your diagnosis?

The first time someone ever talked to me about the Puritan work ethic I was like, “Really?” But actually, when I think about it, it might not be complete bullshit. My ancestors believed in work and not play, and this ideal in straining and stretching yourself as far as possible, because that was how you survived.

There might be something to that being passed down American culture, especially in the circles I run in. There’s a glory to being as busy as possible. For women, there’s this temptation to martyr yourself, which is not to say you should not go out of your way for other people. But this idea of martyrdom was definitely something that was ingrained in my head.

We also met during a very intensive two years, and it brought that out in people.

Graduate school was amazing and we are so privileged to have gone, but the competitive issues that come out of grad school are completely detrimental. It’s the opposite of productive. The problem is people think it’s productive to brag about how much they have to do, and if you dare to take time for yourself, you learn to feel guilty about it.

I was totally ingrained in that, and then everything grinds to a halt. I spend a couple days in the ER and I realize my life has changed. In a way, there’s an upside to having a body that can no longer physically indulge my penchant for martyrdom. It can’t go all the time. It needs rest and sometimes it acts up randomly, and I need to stop everything I’m doing to deal with it.

The learning curve to getting diabetes at 26 versus when your parents are taking charge of you is that you don’t necessarily know what that means. You ignore warnings because that’s how you’re trained to behave. Then your body punishes you by literally giving out and it’s a lesson quickly learned. I’ve come absolutely to a place of, honor your body, honor yourself, ask for what you need and say no when you have to say no. I don’t have an alternative. If I don’t do those things, I’ll do something even worse like pass out or wind up in the ER again.

The only shitty thing is… [Pause] Before my diagnosis I was 100% disconnected from that. Why do I suddenly deserve this level of self-love? The only thing that’s changed is that my body’s gotten sicker. I have been worthy of this level of self-care my whole life, and so have my friends. People have pretty much been universally lovely to me. If I say I have to sit down, test or take insulin people are like, “Absolutely. Whatever you need.”

It’s just such a shame that people are so willing to accommodate me and at the same time not accommodate themselves. The only difference is I have this immediate bio-feedback mechanism that says, “Slow down.” Everyone’s body sends them signals; mine are just incredibly loud and impossible to ignore.

I can relate to the mentality of having to take it. Take it like man, or whatever.

Because you’re a failure if you don’t take it. And everybody is [taking it], so what makes you special? Maybe self-care for those without a diagnosis like this is to learn to listen to our signals.

Going back to grad school and writing, what is your perspective on submissions?

[Laughs] I have so many thoughts on this. The culture that was fostered there was… [Pause] I can’t even say this with a straight face, but they fostered—probably despite themselves—the idea that the way to become an artist is to win a contest, have your play chosen by a theater company, or get some kind of distinction. I can understand in a department with a lot of students why it’s easy to say, “The finished product is the script. Once you have the script, you send it off and it’s not in our hands anymore. People make decisions and you are at their mercy.” That’s much cheaper for the department than, “We’re going to stage your play because your play is worthy of being done. The finished product isn’t the script. The finished product is the production.”

I don’t begrudge the school. I certainly wouldn’t have expected them to have paid for us to have fully staged three-week runs. But my wish for DDW is for there to be a class on self-production, because it is a secret door to exactly what you want. You don’t have to rely on external forces for validation. The secret is, you could wait around for a theater company to produce your play, or you could do it yourself. Then you’ll get a play produced.

I applied to maybe five things total in the entire time I was at DDW, which is like 2,000% less than the average student. I found it totally disheartening. It didn’t seem worth of my time. I had this realization as people were stressing out around me from rejections. If I relied on just submissions, there would actually be nothing on my artistic resume right now. So every single thing that I have on my resume was because I either did it myself or I collaborated with people to do it with me. That was a lightbulb moment for me. Producing is hard, scary, expensive, time-consuming and requires love and trust of a lot of people. You tend to ask things of a lot of people around you, so I’m not saying it’s easy, but to me, that is work that I want to be doing. That’s what I signed up for when I decided to be a playwright.

I wish there was more of a focus for all artists who are starting out, that you don’t have to wait for someone to discover you. Discover yourself.

We think the only alternative is to wait for someone to validate you, but that process can be more burdensome to some than others. We have to adjust according to our own inner Geiger counter.

Did I tell you I got the worst review I’ve ever gotten on “Ferry Play” a month ago?

I only got one review for “The Piano Teacher” and it was incredibly lukewarm.

I’ll take lukewarm. [Laughs] I’ve gotten a lot of lukewarm reviews that I pretended were really terrible reviews, but this one was like, if I was waiting for a bad review, I got it.

Oh man.

[Laughs] It’s totally fine. And it was a prestigious website too. “Ferry Play” was in the Fringe Festival so it got some media attention, and this guy just absolutely hated it. He specifically called out the writing. I still don’t understand why I did this, but my response to the terrible review was to find the author on Facebook and friend him, with no context. I don’t even know if he’s put the two and two together, but now we’re friends on Facebook.

I guess I had hoped that he’d see my name and be like, “Who’s Jessie Bear? Oh right, she wrote that play I hated. Oh that’s interesting, she’s a real person.” I guess that’s my hope for all reviewers, that they understand the work they’re tearing apart was created by real people with a substantial amount of time and energy.

[Brene Brown] spoke about the idea of “taking the critics to lunch.” You have to account for some things the critics might say so you can still show up and do your thing. Tell me about your recent Fringe show “Type What Now,” which was a literal clash of your self-care journey and writing. Why did you want to write it?

To answer that, you have to go back to why I started the blog. It’s sort of a rare thing to get Type 1 diabetes at 26. My particular journey with Type 1 was very bumpy because I was originally misdiagnosed. I had to contend against a medical establishment that contented I had Type 2 because at the time, I was overweight. The whole thing was just interesting on an objective level.

On a personal level, it utterly changed everything I knew about self-love and body acceptance. It turned all of it on its head. I’m almost embarrassed to say this because it sounds arrogant, but I felt like I had a responsibility to share my story. The personal transformation of how I thought about my body was so incredible that I felt like I owed it to the person I was pre-diagnosis, to tell this story. If there is anyone out there that is like me before I was diagnosed and they hear this story, maybe it’ll change a little tiny thing in how they see themselves.

I started this blog and I got a tremendous response. It was extremely exciting for me because a lot of people reached out and confessed they felt a similar level of self-hatred. People you would never have guessed; people who were objectively beautiful. A few people suggested that I turn it into a show. It was never like, “Why yes, I will turn it into a show.” It was more like one day I woke up and thought, “I guess I’m turning this into a show.” The idea had already been formed.

I wrote the script as I write all scripts—without considering that I would perform in it. Normally I don’t perform in scripts that I write. So to make the transformation from playwright to actor was strange, and doing it while playing myself was really strange. The challenge of the play that I didn’t realize until opening night is that having to relive what is ostensibly the worst year of your life in front of a room of people is really hard. It wound up being totally worth it because the response was once again extremely positive.

I’m so grateful and I want so badly to deliver this play to myself pre-diagnosis. That’s actually the person I most want to see this play and it’s not possible. Every night I would get up on stage and think, “Maybe she’s listening.” Maybe I can affect the past somehow, because what a shame that I spent 26 years so fucking miserable when I in fact had a perfect body.

You’ve discussed some of the upsides to a really difficult experience. Can you elaborate on that?

I think Margaret said to you about shame being a very unproductive emotion. For me and probably for a lot of people, shame and self-hate are wrapped up around the same things. I talk about it in the play, but people mistake shame as being really motivating. Like, there’s this crazy culture of diet reality TV shows. The whole thing is just insane.

One thing I noticed as I started hating myself less is that I had so much more time in the day. There was so much more space, which was good because I needed it to deal with diabetes. When you stop hating yourself, you get time and mental energy. You suddenly can think about things beyond yourself. So that’s been an amazing benefit.

I feel like you can relate to this in terms of like levels of serenity. You seem to be in a similar place.

I’ve definitely seen and read about many people going through experiences that were traumatic to them (like your diagnosis), and coming out of it with new skills. Essentially, most spiritual or self-healing journeys begin with really shitty times.

Which is such a bummer! I feel like I have arrived at some new wisdom because of this crazy accident. It would’ve been more impressive if I had gotten to this place of removing self-hate just on my own. I wouldn’t recommend this strategy for anyone. [Laughs]

Yeah, definitely don’t bulldoze your life. [Laughs]

Please don’t get a chronic illness because it’ll make you love your body and appreciate yourself more. I mean, I still freak out over stupid shit. It hasn’t made me completely Zen, but I do feel like I know what I want more and I’m not afraid to ask for it. Even in my relationship, being able to say to Stefan, “I want to be with you and I want it to be forever.” I would’ve felt embarrassed or not worthy to say this before, but nobody knows how much time they have left, so why not ask for what you want.

That to me is self-care—being honest with yourself and being honest with other people.

I spent so many years convinced that people judged me for my weight and that’s all they thought about, but the truth was that was all I thought about, and people didn’t care! At the end of the day, nobody hates you as much as you do.

So many people came up to me after the show and said, “For what it’s worth, the whole time I’ve known you, I never spent time thinking that you were fat or gross.” People have said that to me in the past and I just dismissed it. Suddenly, I was able to hear it and believe it. All that time I could’ve been living this life, so isn’t that a bummer? But I can now, and isn’t that so great?

It’s very trippy.

It’s totally trippy, right?

So you’ve touched on Stefan. You are both artists and are involved in each other’s projects as well. How did you guys keep your balance through the diagnosis?

This diagnosis has affected me the most, but he is a very close second. There’s a lot of baggage that comes along with it. I have this incredible device that wakes me up in the middle of the night if my blood sugar gets too low or too high, but it wakes him up too! [Laughs]

I always feel this happened to both of us. He didn’t ask for it and could’ve left at any time. I’m proud of “Type What Now,” but I’m really proud that we made it together. It felt really significant that he directed it. I feel we share equal ownership of that project that’s a beautiful homage to all the things he’s done for me.

So as your self-care has changed, has his self-care changed?

I hope he says yes. I think it has. All the lessons I’ve learned about body image and self-love can’t help but permeate over to him. Disease can teach you gratitude. I’m so thankful to my body when it doesn’t give up. [Laughs] There’s such gratitude for the systems that still function. I think he would say this has also given him tremendous gratitude for his body.

He told me the most brilliant thing about managing diabetes, or anything for that matter. It was very soon after my diagnosis and I was defeated and feeling incredibly sorry for myself. “Why did this happen to me? This is so unfair!” Then he said, “Right now at this exact second, there are 10,000 systems in your body and they’re all working perfectly. One isn’t working, but so many are–countless are. And if that isn’t something to be grateful for, I don’t know what is.” I think about it a lot when things really get me down. It’s like the climax of the play and I don’t even attribute it to him in the play. [Laughs]

Well you are now.

All him, all him.

Often times with self-care people have to deal with healthcare. What has that been like for you?

Before I was diagnosed I was oddly anti-medicine. “Medicine is slick and artificial and masculine and all about subverting what is natural and good!” [Laughs] Now I am fully dependent on that masculine entity to stay alive, so that’s been a change of perspective.

I think the American healthcare industry is in many ways a terrible shitshow and in other ways necessary and lifesaving. The fact that this hulking entity of insurance exists between me and the things I need to stay alive is maddening sometimes. My experience with insurance is frustrating and it is really expensive to have a chronic illness, even if you have great insurance. It’s actually impossible to have a chronic illness if you don’t have insurance.

A year before I was diagnosed, I read an article right when Obamacare was coming out. It was by a woman who got Type 1 diabetes without insurance. It was all about, “Here’s how I went into $50,000 of debt because I got diabetes and I had to put everything on credit cards to stay alive.” Thank God there are now programs to allow people for whom something like this happens to at least not go broke staying alive.

But it’s [still] really expensive. I have tools that I use which are really critical and important, but the hoops that you have to jump through to get them are very difficult. I’m actually just starting a new job and I will be changing insurance, so that will become my fulltime job for a few weeks as I try to move everything over. I have probably 11 prescriptions between the tubes and insulin and test strips and everything, so you have to be your best advocate when it comes to the healthcare system, because no one else is advocating for you. In fact, the system saves money if you don’t advocate for yourself. So you learn to be pretty fucking selfish when it comes to insurance.

In terms of doctors, I have had both ends of the spectrum. When I was first diagnosed, I had a lot of amazing doctors and also some pretty terrible ones. I was talking to my sister about my hospital stay and I said, “Everyone was pretty nice.” And she said, “I guess they were nice, but nobody ever told you anything.” When I thought back on it, it was true. I probably saw 20 professionals between social workers and nutritionists and diabetes educators and doctors, but they would buzz in and buzz out because they had 9,000 other patients to deal with.

It was highly complicated by the fact that I was told by doctors I probably had Type 2 diabetes. There are very specific tests they conduct to determine whether you have Type 1 or Type 2, and I essentially tested positive for Type 1, and still was told I had Type 2 only because I was overweight. That bias in the healthcare system is incredibly dangerous. The moment that my doctor realized I had diabetes, she took steps that one would take for Type 2, and she made that assumption because none of the test results had come back yet and I was overweight.

In a way, I kind of understand, but the truth was I needed to get to the ER as soon as possible, and instead I was given nine units of lantus and sent home with metformin, none of which are at all useful for a Type 1 diabetic in DKA. In fact, metformin is a very bad drug to take if you’re in DKA because it can make ketones worse. The reprehensible part is after those test results came back and showed that I had Type 1 antibodies, the hospital doctors still told me I had Type 2. Thank God I was put on an extreme regimen of insulin right away.

On the other end of the spectrum, after I got out of the hospital I went to my endocrinologist, who is my endocrinologist today. She instantly told me I had Type 1 diabetes. She’s an incredible doctor. She’s been incredibly helpful and thorough, and helped me through this really difficult time.

It’s just a little scary some of the things that went down.

Recently I was watching an interview about the average time for a doctor to see patients being seven minutes, no matter what the situation might be.

The first time I saw my endocrinologist she was 45 minutes late and I was like, “What the hell?” But it’s because she takes the time she needs with people.

What would you say to someone who really struggling in their life right now?

When you’re feeling really lost, whether that be a place of self-hate or a depressive episode, the most important thing is to be validated. So I would say to that person, “You’re a person and that’s enough.” And on top of that, “You’re an artist and that’s enough.”

Feedback on work is really important, but I wish every feedback started with, “This is a play and you’re a playwright, or this is a script and you’re a TV writer. And now let me give you some feedback.” That idea of exactly who you are being absolutely enough is in fact perfect and beautiful.

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