This is the first in a series of interviews with theatremakers who have chronic illnesses. 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.—Sara Brookner

How can I make a life in the theatre work with this?

This was one of the first thoughts I had after being diagnosed with multiple sclerosis (MS) nearly five years ago. Late that night, feeling bewildered and unmoored, I stumbled upon a webpage listing famous people who have MS…and discovered Emily Mann, the acclaimed playwright, director, and Artistic Director of the McCarter Theatre, on the list. It offered me my first glimmer of hope.

I quickly got my bearings and learned to manage and even get past debilitating fatigue. Years passed without any major symptoms, until this winter a new attack brought the question back into my mind. I found myself thinking about Emily Mann again, wondering: How does she make a life in the theatre work?

Emily graciously agreed to be the first interview in this Chronic Theatremakers series. I’m sure there are others out there facing chronic illnesses and questioning how to navigate their condition and theatre work. I’m interested in exploring our capacity for resiliency—how theatremakers with chronic illnesses face obstacles and overcome them.

During our interview, Emily and I discovered similar approaches to how we manage our MS (a blend of medications, yoga, diet, and alternative healing) and discussed the importance of mindset. While she’s had more time to fully embrace positive ways of thinking, it inspired and broadened my own approach to how I think about MS: it may define my experience, but it does not define me as a person.

(Before diving in, if you’re unfamiliar: the National MS Society defines MS as an autoimmune disorder wherein the central nervous system gets confused and attacks myelin—the fatty substance that surrounds and insulates the nerve fibers—and the nerve fibers themselves. Because of this, the nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms, including numbness or tingling, fatigue, and—what many associate with the disease—trouble walking.)

Sara Brookner: Everyone has a different experience with MS, but I have found we all connect in some way, no matter our experience.

Emily Mann: Yes. That’s the thing about MS, every single case is different. I was diagnosed in the early ‘90s, and the medications were not as developed as they are now. I tried to do everything naturally as long as I could because when I first tried the medication, the disease felt better than the side effects of the drugs! I found a healer whom I worked with for quite a few years, and then unfortunately I started to descend into a progressive state. At that point my family said, “You can’t do this without drugs. You have to meet with a neurologist.” So I met a great neurologist recommended by a dear friend, who works only in MS research and treatment. He was willing to work with my healer, saw that every case is unique, and basically saved my life. Not only did his treatment stop the progression of the disease, but eventually healed it. I am in complete remission now and have been for many years. I am very, very fortunate, and I know it. It was his drug cocktail, yoga, and diet that did it.

Sara: When I was diagnosed I wasn’t sure what it meant, given late nights in the theatre, and the stress, which was what I thought had induced MS in me. For years I didn’t really share with many people outside of my inner circle…and after my recent attack it really got me thinking about how I identify and actually how not sharing my story was in some ways letting it have more control over me. You’ve always been open about having MS, so I’m curious—how did you get to that point?

Emily: I had been misdiagnosed for years. It took an MRI to finally diagnose it in 1994. I’m sure you had an MRI right away, but in those early days, you didn’t. We at the McCarter Theatre had just found out we had won the Tony Award for the best regional theatre, and I was going to be on television to accept the award. I didn’t want to tell my mother about my diagnosis because she’d had a cousin who had debilitating MS and to her, it was a death sentence. I wanted my mother to enjoy watching me accept the Tony on TV. However, I wasn’t yet being treated and I couldn’t walk that day. My then-Managing Director, Jeff Woodward, said, “You are going to get up there, and accept the award for the theatre. I will be holding you on one side, and the President of the Board, Liz Fillo, will be holding you on the other. And it will just look like we’re a great team.” And it did! No one knew they were holding me up! My mother didn’t know until days later, when I finally told her; she just enjoyed the whole of it. But the funny thing is it’s become a tradition! Now every year since then the artistic director comes out with her board president and managing director to accept the Tony Award for Outstanding Regional Theater.

Photo by Anita and Steve Shevett.

Soon after that I went into rehearsal for Having Our Say on Broadway. I could walk at the start of the day, but I was being carried out of the theatre every night after rehearsal. One morning, I was having a really nice interview with Mel Gussow, and I didn’t want people wondering, you know, “Is she a drunk?” or “What’s wrong with her?” so I decided to come clean, and said, “I’m doing all my work, I’m able to get it all done. I’m feeling positive and good and I’m seeing someone who I think is helping me a great deal. I have multiple sclerosis.” He put it in the New York Times interview.

Also, as soon as I was diagnosed, I told our Board President. I said, “I will resign,” and she said, “Are you out of your mind? All we want to do is find out how we can help you.” I had all this awesome support. Support from my then-boyfriend, now-husband, who stuck by me. I told the whole staff of the theatre. And all they wanted to do was find out how they could help. So I don’t know how it would have been for me if I were a freelancer, if I were alone.

I didn’t get many directing offers for quite a few years outside of my own theatre after the Gussow article, which was interesting, even though I was nominated for a Tony Award, though who knows if it’s because of the MS. But when I advise people who are getting diagnosed—and I do it a lot, because I didn’t have anyone to talk to when I found out—I do say if they’re actors, certainly, not to tell people. People don’t understand the disease. If you feel you can work, it’s your private business. If you’re working with colleagues who are really good friends you can tell them, but it can sometimes get in the way of being hired. So I advise certainly actors not to tell too many people. With playwrights, it doesn’t matter so much.

Sara: Or dramaturgs?

Emily: Right. But I’m actually glad people know about my disease even if it cost me some work. For me, it was the right choice. Each person has to make her own choice. And I feel fantastic. I mean, I’m healthier in my 60s than I was in my 40s.

Sara: Since you were diagnosed, have you approached your work differently? Theatre can be an intense lifestyle—how have you approached everything going on with your body, and trying to be fully present for the work?

Emily: When I was first diagnosed I was relapsing-remitting, so I had bad periods where I was actually in a wheelchair, and then other times when I was up, and I never knew exactly when it would hit me or for how long. Those were really tough times, for me, for my family, and I think for the staff as well, but everyone was so cheerful and wonderful. I did not miss a board meeting, I did not miss a rehearsal. I had shorter rehearsal periods—I did the straight sixes, sometimes straight fives, which helped me a lot because I could rest and prep before and after, and I knew by the clock what I had to do. I also had certain foods that the healer was telling me I could have that would help give me energy during the five-six hours. Remember, I was not on medication at first. With all of the great medications today and the possible cocktails, I would not recommend this now! In the early days of my illness, I was keeping everything going through food and alternative techniques of healing. And then yoga came into my life. The medication and yoga together are what saved me. Until I had the medication, the yoga kept me from getting spastic, it helped get rid of the pain. Do you get foggy brain?

Sara: Sometimes, yeah.

Emily: I got it terribly before I was on medication, and so to get through a rehearsal clearly, the yoga was vastly important. I did it with the companies, and it turns out it was really great for them as well. Once you‘ve finished the half hour practice, you are clear as a bell.

Sara: It’s a great warm-up!

Emily: It is. I do it to this day—fifteen years of doing yoga for half an hour with every company I work with. So there were seven or eight years of that, being in and out of the wheelchair, then almost going into a progressive state, then finding my wonderful neurologist, who had to go through many different experiments because his specialty is making the right drug cocktail for each patient. Some of them didn’t work, and I had awful side effects. But again, being in such a supportive environment, people helped me through it, and I kept working through it. I cannot imagine having done this without the extraordinary support system I’ve had.

I was directing two shows a year, writing, had three shows on Broadway, ran the theatre…I still don’t know quite how I did it. Part of it was a self-hypnosis technique. I think my work got better because I had to concentrate so hard to be completely focused, and doing the self-hypnosis technique to think either above or below the pain. Once I was fully connected with the work, I was unaware of the pain. I felt better physically and emotionally when I was working. It’s when the work ended that I had to deal with battling some depression and pain and the real disability. I learned from my healer that depression was part of the disease.

Sara: They say that on the National MS Society webpage now.

Emily: Good. It wasn’t then. Two things I remember from her: 1) she said: “Those who look at their disease as an opportunity rather than a calamity are most likely to get well” and 2) “You will get well. Do not be hopeful. Be sure.”

Sara: My healer has said basically the same thing!

Emily: Isn’t that awesome? From the time I met her, I never thought I wouldn’t get well. I always knew I would walk again. I didn’t know how far or for how long, but I knew I would. A lot of it was state of mind. A discipline of the mind; as disciplined as we are with our work. Negative thinking was something that she trained me past. And it helped me in my life, enormously. I still am very positive; I feel strong and resilient. And whether it’s Western medicine, or nontraditional medicine, or Eastern techniques, whatever it takes, I take advantage of what works.

Sara: Yeah! It’s always really gratifying to speak with people like you who are open-minded enough to realize it takes many approaches to medicine.

Emily: My neurologist was as well. He felt that the medicine helped me so quickly because my healer had so highly tuned my system, trained me to be bodily aware, and cleared my body of toxins.

I’ve learned so much from having MS. For example, I found that people want to help you. I never used to ask anyone for help, I was always helping other people. I learned a lot about myself and other human beings and trusting the universe in a way—that when you open up to others, there are a lot of kind people in the world. And you discover who your friends are.

Sara: I have found other gifts in it as well recently. I’ve been dealing with this new recurrence for the past six months or so, and I’m doing so much better, and like you, I managed to hit that place of not just, “I hope I get better,” but, “I will get better.” I don’t know how long it will take for me to drive again, but I know I will. Also, I don’t think I had really experienced physical pain before. I was always sympathetic to people who had physical pain. But it gives me empathy. I don’t think you can totally know what it’s like to be in that place until you’ve been through it.

Emily: That’s right.

Sara: And if I get back to that place again, I’ve learned through this experience what I can do for next time. My first MS symptom was losing vision in my right eye, and it came back. And then I lived my life for many years in a place of, “I have MS, but I don’t have MS.” So when this happened it was kind of a crisis of identity, and I realized, I have to integrate this into who I am, but not let it rule me.

Emily: My healer always said, “You don’t own this disease, you’re renting this disease. Be careful that you don’t make this your identity.’’ It’s a reality, you are challenged by it, you are working through it, you’re making friends, in a way, with this disease—but do not let it rule you. By self-identifying with it, some people begin to enjoy the benefits of being disabled. You could think, I’m feeling okay today, but I’m going to still ask everyone to get me things. Or I don't feel like helping make dinner tonight so I‘ll pretend I can‘t do it. I play psychological games with myself. I never owned a wheelchair. I rented one.

Sara: Just like you’re renting MS!

Emily: Right! I think it’s really important to acknowledge it but not give into it.

Sara: Yes. That’s exactly what I’m trying to do. And this is part of that process.

Emily: It is a process. And at some point you may be in complete remission.

Sara: We’re living in a time when MS might be cured.

Emily: Absolutely. I’m in complete remission. The plaques have healed. I still have damage that I don’t know I’ll be able to ever fully repair in this lifetime. But I’ve made friends with that. I’m not going to be playing tennis, running, or dancing the tango. But you know, I didn’t actually picture I would ever again be this healthy, this vibrant. In a lot of ways, I feel better than I‘ve felt…probably ever.

Sara: I find another tool for staying healthy is an awareness of what I need.

Emily: What’s really important, I think, is planning and scheduling. I think it’s also true of directing; the schedule has to be right so you can do your best work. It’s about getting really in touch with your body, and I find that everyone, whether they’re dealing with chronic illness or disabilities or not, they have their own biorhythms. We’re just more in touch with ours. That’s one of the things that I find so amazing about MS. There was a time when I was not as well as I am now, where my body would tell me, “Oh, I guess I just got a little stressed out, I’ve got to take a breath, take a moment, do a stretch…” I don’t know about you, but I’m constantly to this day monitoring what my body needs. I think that’s actually a great skill!

Sara: I’ve realized that’s half the battle. That my physical being reacts to what I’m going through mentally and emotionally. And I think it is no coincidence that this latest attack, it came on very quickly the week of inauguration. I had been stressing myself out for two months!

Emily: So we know how you felt about that.

Sara: Right! I’ve noticed now, that whenever I have more anxiety about a situation, my body’s going to react to that, and it’s about me needing to really figure out how to train my mind, and shift how I respond.

Emily: Exactly. But you know it’s an incredibly smart life skill, whether you have MS or not. I found out that my MS got triggered by grief. Sometimes by rage. So then how do you put all that through your body so it doesn’t make you ill, whether it’s Trump rage or whatever it is that’s setting you off? How do you then monitor what you do with that information? I think it’s very useful—certainly in rehearsals when you’re often dealing with so much emotion in the room.

I don’t know about you, but I used to have to say, “Okay, my right hand just got buzzy. Interesting. Ah! Okay. What does that mean? Does that mean something good is going on, or am I concerned the scene isn’t working? Oh no, the scene’s working great, it just triggered an old grief.” I find it endlessly fascinating. Our bodies are extremely sensitive and people with MS are hyper-sensitive. That’s kind of cool given that we’re in the theatre—that’s kind of great. You can use it healthily.

Sara: I also believe that it has helped me to learn some life lessons that anyone needs. Because you know, really, something could happen at any point in your life that could dramatically change your experience. For us at least we know physically how that might happen. And I think it’s helping me to approach that mental space of, “What good is it doing me to get upset about something right now?” It’s not always going to work, but at least I can try to have that.

Emily: That’s exactly right. I had the exact same experience. You were talking about empathy, and I think it’s one of the most beautiful gifts of the disease. You really learn—deep in your bones—how to treat people with respect who are struggling.

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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.