The Importance of Social Goods and Sharing Your Story
This is the second part 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. I spoke with Trip Venturella, a theatremaker with epilepsy, in July 2017. As you read, recall that Congress was (and still is) in the heat of their seemingly never-ending push to “repeal and replace” the Affordable Care Act. —Sara Brookner
Sara Brookner: How do you identify as a theatre artist?
Trip Venturella: I identify as a writer by way of being an actor. I started out in college acting, and then made a somewhat rocky transition into the professional world—traveling to Chicago, India, and Sri Lanka, and I did all sorts of stuff. Then I landed in Boston, and I started working for a bunch of different companies, including Apollinaire Theatre Company, which does a lot of very cool, contemporary theatre. It was there that I realized what was being done by playwrights, and how incredibly hard hitting and exciting and fun it was. I thought, “Oh, maybe I should try to write plays!” So I did, and I decided that it was a really great way to get my voice and my understanding of the world as I saw it out there. I started doing it and I just didn't stop; I applied to grad school, and I’ve been on the grind ever since.
Sara: Tell me a little bit about your epilepsy—has this always been a part of your life, or were you diagnosed later in life?
Trip: I was diagnosed when I was nineteen, in a pretty cataclysmic way. I had a seizure and fell out of a second story bunk bed. It happened while I was sleeping, and I split the skin on my head, about five inches total. I woke up in a stretcher in a hospital, wondering what was going on, and they said, “You fell out of bed,” and I'm like, “Can I go to class today?” It was the first day of classes of my sophomore year of college, and I remember the doctor looking at me and saying, “No, you will not be going to class today.” It had not been a forgone conclusion that I was epileptic until maybe two weeks later, when my roommates woke me up and said “Trip, you were shaking and unresponsive in your bed.” I think after another incident where this happened, a neurologist noted that my falling wasn’t the cause of these seizures, but the seizures had in fact perpetrated the fall. So I got this diagnosis fall of my nineteenth year, and I’ve lived with it ever since.
Sara: Wow. Tell me a little about what causes epilepsy and seizures.
Trip: Epilepsy is actually a really funny term because it covers this huge range of seizure preconditions. A neurologist explained to me that everybody could have a seizure. Most people’s seizure thresholds are very high, and certain things will lower your seizure threshold. So a brain tumor, or diabetes, or having a condition like MS could do it—
Trip: My seizure threshold is particularly low, and unfortunately for my condition, which is generalized epilepsy, my brain is wired to have grand mal seizures. And a grand mal seizure is what the “image” of a seizure is—you fall over, you’re shaking, you’re unresponsive. So that is the condition that I live with. And fortunately I take medication every day, twice a day, so that I’m not having seizures like this. I am very well taken care of.
When I was first diagnosed, it was so frightening, because there was this huge unknown. Why am I having these seizures? Why do these happen? What is my medication going to be? Am I going to be able to stop? Because a seizure is an electrical storm in your brain. The way that your neurons are wired are such that when these wires trigger, this electrical storm propagates, and fills the entire brain, and you become unresponsive—at least in a grand mal seizure like I have. So when this diagnosis first came out I didn’t know what medication I was going to be on. But fortunately they pretty quickly found a medication that worked for me. And I've been on a dosage that works ever since.
Seven or eight years ago, maybe if I’d known that people were talking about disability in this way it would have helped me realize that it’s okay to be an epileptic person, it’s okay to have this for the rest of your life.
Sara: That's great. You can write a play called Electrical Storm in my Brain.
Trip: Yeah, my origin story. How I became Thunderhead.
Sara: It's interesting; I was diagnosed right before I turned twenty-seven, so I was a little bit older than you. How did you feel? Start of your sophomore year, you're in school—how were you thinking about it in terms of your life, when you were diagnosed? That’s a formative phase of life for that change to happen.
Trip: It really was. I had a lot of trouble accepting the diagnosis. When you are diagnosed with a seizure condition that late, it often means you are never going to not have it at some point—you are wired that way. There is no turning back. Getting that news at nineteen, I thought, “I didn't have seizures before, maybe it's just a temporary condition.” Even though I probably was having seizures before. So I wouldn't take my medicine, or I wouldn't take it up to dose, because if I took my medicine it meant I was sick. And if I took the full dose, it meant that I would be sicker.
Sara: You were kind of in denial.
Trip: Oh definitely. I studied abroad in India for six months, and while I was there—this was going into fall of my junior year—I thought, “I can’t take the risk here. It’s not safe to have a seizure here.” So I was always on medication, every day. Then when I got back I thought, “Well, maybe I'm not sick anymore?” I just was not able to process fully the idea that I was sick, especially during the spring of my junior year. I had several seizures. And of course in college you're busy going from place to place, and going out, and you forget to take your medication. I really was very lucky to have a group of friends who were so good at taking care of me. Looking back, I should have shaken myself—“Be more grateful!” Because they were so truly, truly great. I was just very unhappy with the fact that I had been diagnosed, and I wasn't processing it. And I didn't really know what mental health options were available to me to talk about that condition. When I went to see a counselor at my school, I don't think I was totally honest with them. Their questions were like, “What are you doing to be unstressed?” and I'd say, “Oh, you know, I'm playing music and acting, it’s great!” But I was having seizures every two weeks. I was sort of lying to them, and lying to myself. That was how I processed it at that point…which is not at all.
Sara: I'm finding even more points of connection here, actually. For me, I was in denial because for so long it felt like, “I have MS but I don't have MS,” and the whole point of both of our conditions is that they could strike at any moment.
Sara: It sounds like your medication really helps prevent that. And mine mostly can too, it depends. You know I've been on medication now for almost five years, but there are no guarantees. That’s still hard.
Trip: Right. I wish I’d had a way to help me accept what was happening to me in the time it was happening to me. I felt kind of alone. Especially at college where everyone has endless amounts of energy and is seemingly doing whatever they want. It really was tough. I had a lot of support, but it was suddenly like—I'm this thing now? I didn't choose to be this thing. I didn't choose to be sick all my life.
Sara: Yeah, it feels like your body is betraying you. And what’s also hard is that as a playwright you're doing work that is based on thoughts and ideas. I sometimes struggle with separating the mind from the brain.
Trip: Yeah. My brain is so tied up in how I think of myself—“I’m a smart guy who has funny things to say!”—and then it turns out that there's this dark side of the thing that enables my personality.
Sara: It's weird not to feel like I have control, even though I can do certain things that might help. I’m wondering how this all has affected you in theatre settings. Obviously you are open about talking about it now—what made you feel okay about being open, or have you always been? How have you communicated in theatre contexts? What's been the reaction?
Trip: I felt like I had to because I don’t know when I will have a seizure. In theatre you spend so much time with other people, and you work with them in this very interpersonal way. It's important for people to know that I have this condition. Often I find the right moment and say, “I'm epileptic,” and the reaction that I often get from them is, “Oh, I didn't know.” Typically, people are very supportive. People, I think, look at me no differently being epileptic, in part because it’s invisible and in part because they don’t see the full condition of it. It’s better for myself to keep communicating it because epilepsy was virulently discriminated against and had all these terrible things associated with it up until only the middle of last century, for hundreds and thousands of years. It was evil spirits, and locking them in an asylum, and get them out of here, and chop their brain in half, which is still a treatment that epileptics undergo, especially people with more severe cases. I find that it doesn't necessarily change how people view me or interact with me, and it's good to keep pushing it out into the professional and the social world, not just so that they know that it might happen, but also so it dispels the notions that people might already have, and pushes the ones that were so prevalent in the world further away.
Sara: I feel the same way. I hate that for so many people, when you hear MS you think wheelchair. I mean that was what I thought the first time it was raised as a possibility. And so it's educational for those people to learn what else MS can look like and be. I find that I’m often pleasantly surprised how many people will say, “Oh, my brother-in-law has MS,” or “Yeah, my mom has MS.” It’s more common, and unless you share, how else will you know? And that can create more support and form more of a community.
Trip: Yeah, it's great to find who shares your story, and your experience, and appreciates the fact that you're sharing that and opening it up. I remember the first person I ever met that also had epilepsy—she was a choreographer, and she was so shocked to meet someone else who had it, because it’s fairly rare. I think that is the moment when I realized I should tell other people. I was working with her on a dance piece in college, and she was so excited—it was like, we have this connection, wow! Even though we were already working together, it became a really cool way of sharing. We were both epileptic performing artists. And potentially because I had struggled so much with actually managing to overcome the fact that I was epileptic, it helped me identify and integrate that into who I was and what I was experiencing.
Sara: What do you wish you knew earlier? Do you have any other tools you've learned along the way?
Trip: I’d like to frame this as sort of social tools, or social goods. One of the things that I’ve dealt with is health insurance, because as an epileptic I need medication and annual check ups with a neurologist; I need to have coverage for an ambulance ride, and possible MRI scans. Up until I was twenty-six, it was not a problem staying on my parents’ health insurance. But the only way that could happen was because the Affordable Care Act allowed their health insurance to cover these sort of “minimum essential benefits,” they’re called. And then when I turned twenty-six I was able to buy health insurance through the Massachusetts Health Connector Market Place, and I knew it would still have these benefits. Then once I moved from there to here in Ohio, I knew that as a graduate student I would not be making any money, so I switched my coverage from that to a Medicaid program. When we talk about disability in the theatre, Medicaid is a way that theatre artists are able to do theatre, especially disabled theatre artists. It is the thing that allows them to receive bi-monthly treatments for colitis, or transport help because they need it to go from their house to rehearsal, or even if they have a very serious condition, the medical treatments needed to keep them alive. Medicaid really allows a lot of theatre artists to get what they need, including me. It’s a platform that I can stand on, knowing that my treatments will be taken care of, and there’s a wide variety of hospitals and clinics that will help me.
I cannot be uninsured. That’s just not an option. That’s why it’s been so scary the past few weeks, with the government trying to slash Medicaid, because I know that I’m a few years away from going into the public market place again. If that didn’t exist, if that wasn’t functional, or if I wanted to go back to school again and wasn’t able to pay for insurance, or if I was unemployed, or if my epilepsy got worse and I had to go back on Medicaid, the scenario with the Republican health care plan becomes dangerous for me. These sorts of public goods allow people with disabilities to create theatre—it allows us to live. And without them, people do not have the choices or the opportunities. Without those opportunities…what are we building our society for if not to help people do the things that they are meant to do? We need to enable people to be their best selves. Part of doing that is providing these support mechanisms, so artists can flourish. Those are some resources that I found really helped me be a theatre artist.
Sara: We’re talking on a really interesting day, with the threat of ending Obamacare—it seems like we think we’ve killed this issue, and then it grows another head. Today, it seems as if we are on the cusp of feeling like maybe we can stop worrying as much, because this is the day after they’ve said, “Nope, we are not going to purely repeal Obamacare.”
Trip: I'm so glad that you are doing this. Seven or eight years ago, maybe if I’d known that people were talking about disability in this way it would have helped me realize that it’s okay to be an epileptic person, it’s okay to have this for the rest of your life. People live with this, people live with much worse, and it’s going to be alright once you accept that this is part of who you are, and you start working with that.
Sara: Do you think it’s been a blessing or a curse?
Trip: I think that it’s both, because it’s a curse in that I have to live with something that sometimes absolutely and totally incapacitates me, even though once you have the proper treatment it won’t. But I also have this perspective on things that I just did not have before, and I think that’s really great. If I had known that it would open my horizons, and open my understanding, and even my sympathy, I think that maybe I would have been alright with it earlier.
Sara: I so appreciate your generosity and willingness to openly talk about this, thank you.
If you have a story or strategy you’d like to share about how you cope and make your theatre life work, please share it in the comments.
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Thanks for this deep dive into disability and disability in the arts. As a self identified playwright with a disability- I appreciate that this was not inspirational porn. I so look forward to meeting both of you- in the future- and continuing the convo.Warmly, your new fanArlene Malinowski Chicago
I really appreciate this and I am so happy to see a discussion of epilepsy. I am a playwright and my spouse has epilepsy. I work a lot with a theatre and I remember sharing with the AD my fear that my husband might have a seizure during a performance. He looked at me and said,"It's okay if he does." I have taken his words to heart.
Thank you for this. Very brave of you both to talk about this. I found it interesting and so insightful into other people's lives.