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Playwright Caregivers

Carlyle Brown: I thought I would bring us all together to talk about playwrights and caregiving and how we manage our professional lives with our personal responsibilities. In my case, my wife had a stroke which left her with paralysis on her right side and aphasia. It was a nightmare for sure, with constant challenges and struggles sometimes in a system that‘s not always very helpful. There‘s a whole culture in medicine that you encounter, which you would not otherwise be prepared for.

Barb, my wife, was my dramaturg, and now she couldn’t speak. So, we used our artistic practice to try to just communicate with each other beyond basic needs. That’s how A Play by Barb and Carl got started. It was written in real time as a way to check in with each other about what we were feeling, and that was extremely helpful. As it progressed, it gave us benchmarks for her progress. It was something to tangibly look back on that we could agree on. Still there was, and is, always the problems of communication and the way you listen, changes that change you. I reached out to you guys to ask what are your challenges as playwright/caregivers maintaining your work and your career under similar circumstances.

Catherine Filloux: My situation is that I have been married to John for thirty-seven years, and I knew before I married John that he had multiple sclerosis (MS). First of all, John is an actor. He was a great actor, and at this point he no longer acts. As a disease, MS really depends on the person—how it can be, how the symptoms can be. When he was diagnosed, there were no drugs. Now, there are drugs, and a lot of what the drugs do is retard the disease. But back at the beginning that wasn’t possible because there weren’t any. So, as he went on a regimen of every possible drug that was out there, I watched that happen.

I want to say that I obviously hold him, his person, his soul, and his career in high esteem, with a kind of reverence that has a holy quality to it. I witnessed, as an outsider, huge amounts of discrimination from the beginning. When he divulged that he had the disease, he was let go from jobs. I have also witnessed the situation with health insurance companies that made it clear that being ill and having a disease not only signs one up for having the disease, but also for a full-time administrative job of managing your disease. I think that health insurance or the managing of healthcare is a human right, and in this country, it is clear to me that health insurance companies are for profit. They make tons of money, with record earnings going to shareholders. The way disabled persons are treated just in terms of transportation in New York City… bathrooms are not necessarily equipped for somebody to go. They are humiliated even by simple realities.

A man holding a book to his chest speaks to a woman with a cigarette in her hand.

John Dagget in Lemkin’s House by Catherine Filloux. Photo by Camille Assaf.

Elaine Romero: My husband, Brad, and I have really solid ground here in Tucson, but we left that solid ground to go to Chicago. While we were in Chicago, I worked for a year, teaching at Northwestern University. And about five weeks after finishing my contract, Brad had a stroke.

We were at the Chicago Diner on Halsted Street in Chicago. I had just read that morning the signs of a stroke. Brad was sitting on my right, so I didn’t see what was happening on the right side of his face, which is where the stroke was hitting. Same stroke that Carlyle’s wife had, same side of the brain. I thought he was choking, so I gave him the Heimlich maneuver repeatedly. He was trying to talk, but he couldn’t get any words out, and I kept thinking, Why can’t he talk? He’s trying to say something, but nothing’s coming out. He must be choking. And I kept giving him the Heimlich maneuver. We called 911, and they got there really fast. When they came, I crawled into the ambulance with him. They asked me what happened, and I looked at the EMT, and I said, “He’s having a stroke.” She said, “I’ll be the one to determine if he’s having a stroke.”

I thought, I’m a playwright, how can I become a breadwinner?

We got to the hospital, and we gave him tissue plasminogen activator (tPA) which can reverse the impact of a stroke. The next day, when the emergency room doctor saw me, she said, “How is he doing?” And I said, “Well, he’s not able to move the right side of his body and he can’t talk.” And she said, “Oh, that’s so sad.” In the moment you don’t really know what things mean. You think you know. I was still holding out hope the tPA could work.

I’m sorry for crying so much. I love Brad more than anything. I love him more than plays. I didn’t think there was anything in the world I loved more than plays, but it’s Brad.

From that second, I became the decision maker of this family. I became the breadwinner with no bread. I thought, I’m a playwright, how can I become a breadwinner? But our friends helped us. It was the most humbling experience of my life. I had never really asked for help for anything, yet people showed up. They take you in, they love you.

I took a job in Arizona, in this rural area near Prescott, teaching playwriting. I think I was going to make $1,500 or something. I drove us from Chicago so I could teach that class. Then I decided that I would just cold call the University of Arizona where I had been an adjunct before. They gave me a tenure-track position. I was able to get tenure in 2018.

Eight months after the stroke, Brad developed epilepsy. That has been really challenging and has, of course, impeded his stroke recovery. They have to give him epilepsy medication that slows things down, which slows his brain down, which also slows down the recovery. And you think, Why? Why did Brad have to have that? They call it a cryptogenic stroke, which is a mystery. I wrote a play about it. It’s called Halsted. We presented a virtual reading of it at Arizona Theatre Company. Sean Daniels directed it while he was Artistic Director there during RomeroFest. I’m their Playwright-in-Residence.

Four actors in their respective homes smile during a performance over Zoom.

Screenshot of Nick Cordileone, John Gregorio, Caroline Neff, and Catherine Castellanos in a reading of Halsted by Elaine Romero at Arizona Theatre Company. Directed by Sean Daniels. Sound Design by Max Baines. Original music by Benjamin Schemer.

Carlyle: I relate to everything you’ve said. There is some respite in being a dramatist in such a situation. We create drama where people wake up in the morning and do something different to make their lives better.

There are those introspective questions that happen in trying to just communicate with Barb from day to day. One of the things one has to do when communicating is to ask yourself whether you are hearing what you want to hear. That’s not a question that you normally ask yourself, and you’re listening with your entire senses, and somehow it works. You do have these complex, intimate conversations, which I don’t know, make you grow.

When you’re talking about improvement, it’s definitely not a Disney movie. It’s like really slow, really slow. And there’s just so many... what other people would say are little improvements, which were major miracles to us, and all the more miraculous because doctors said that it was never going to happen.

Elaine: When Brad had the first seizure, I took him to this hospital, and I was telling the doctor, “Brad’s not at his baseline. He’s able to talk more than he is right now.” And the doctor said, “I looked at his brain scan and there’s no way a guy that had a stroke like that could ever speak again.” I took Brad out of there so fast. I don’t want him to be around anybody who doesn’t believe in his future.

Carlyle: Yeah, absolutely. You can’t grow an arm. We’re not lizards. But your brain is an incredible regenerative organ. But there are other things that are operating in recovery that come into play, which I guess we would be naturally attracted to—things like, spirit, perseverance, love, patience, all those intangible things that to my mind make an enormous visible difference. The process of achieving what that might be, I think, is probably the most important thing we do every day.

Two men stand with a woman in a wheelchair under a spotlight.

Kimberly Richardson and JoeNathan Thomas in A Play by Barb and Carl by Carlyle Brown at Illusion Theater. Directed by Carlyle Brown. Scenic design by Dean Holzman. Costume design by Barb Portinga. Lighting design by Alex Clark. Sound design by C. Andrew Mayer. Stage manager Rachel Lantow. Photo by Alex Clark.

Elaine: The incremental moments. I remember when we were at the hospital and he couldn’t move the right side of his body, and he was just concentrating so hard to try to move it. And three days in, I was standing with a physical therapist, and his thumb flipped up. And she and I looked at each other, and we both burst into tears. He found a pathway. He found his way to his arm, and we were just like, “Oh, he found it!” And it’s in all the neurons and all the synop— I keep saying synopsis—synapses and all of that, and they’re looking to find a way. It’s like, how do they find those pathways? You just want to help and make all those connections and just say, “Oh God, I wish I could just unify the two hemispheres of your brain so that could happen for you.”

Catherine: Yeah. I was struck, Elaine, when you were talking about something I experienced long, long ago, which was so deeply heartbreaking and deeply troubling to me: to see family members being invalid, and then to be the person who actually decides to put that family member in a wheelchair and just anticipate their demise. There is this part of me deep down inside in my belly, which maybe is the same part that fights for human rights, that I will never, ever allow that to happen. Ever. And don’t you dare even start down that road and when it’s a family member. I think that’s what all three of us in our own ways are fighting.

I used to think that there were solutions to these problems. Turns out the solutions are a series of moving targets.

Carlyle: My play about my wife and me and her stroke had a production at Illusion Theater here in Minneapolis. I don’t know what the statistics are, but in terms of the people who came to see the show—and we always say representation matters, and people come to see themselves—they’re a lot of people who have had strokes, a lot of people asking these same questions. Of course, it was really, really gratifying and reinforcing to be able to put something out there that people recognize. What we’re talking about in the healthcare system, everybody knows what the deal is.

I think one of the most frustrating things about the system is the bureaucracy itself. The right hand doesn’t know what the left hand is doing. It’s so incredibly dysfunctional that you feel like it has to be on purpose. Shit can’t be this stupid by itself. Capitalism is the culprit. Just how a lot of your medical decisions seem to get made… One day in rehabilitation and they can say, “Well, you‘re done. This is as far as you can go.” And that’s it. It’s mandated somewhere, but where? By whom? It comes down to how much medication you can get for your pain. After the healthcare system has turned the United States into a country of drug addicts, now they want to go to the other extreme. No, we can’t give you too many pills to stop your pain so you can live. It’s the very system... it’s filled with humane people driven by inhumane impulses.

Elaine: Those medical restrictions—this many days of physical therapy, this many days of speech therapy—you run up against that. The dismissal of the humanity of the person is really painful. If you just spent a moment talking and letting him articulate things and not rushing, you’ll get that it’s still in there. It’s not about him being what you need him to be for you. So, yeah, the medical system is really hard, and then some days it‘s just so overwhelming. I’m thinking, What if something happens to me? because I’m holding up this universe, and I’ve got to be that person to hold up this universe.

Carlyle: Oh absolutely. I mean, you’re the caregiver, right? If something happens to you, then the whole thing falls apart. I used to think that there were solutions to these problems. Turns out the solutions are a series of moving targets. With COVID staff shortages, getting personal care assistance is nearly impossible. Respite care is complicated and expensive, particularly since COVID, because everybody wants to make more money, and insurance doesn’t cover everything. It certainly restricts your mobility. Sometimes I just have to take her with me. We travel well together. But it‘s definitely not normal travel.

A woman seated in a wheelchair speaks passionately to a man squatting in front of her.

Laura Esping, Kimberly Richardson, and JoeNathan Thomas in A Play by Barb and Carl by Carlyle Brown at Illusion Theater. Directed by Carlyle Brown. Scenic design by Dean Holzman. Costume design by Barb Portinga. Lighting design by Alex Clark. Sound design by C. Andrew Mayer. Stage manager Rachel Lantow. Photo by Alex Clark.

Elaine: I have to take Brad because of his epilepsy and, I’m the person who’s been on the phone with the residency and said, “I know you have an accommodation for parents, and I‘d like to tell you about my situation.” And then I explain that my husband has epilepsy from a stroke, and we don’t anticipate a problem. Then, outside of San Francisco I had this really great residency, and one or two days before we left, Brad had a massive seizure. And I was trying to get the ambulance to find this little room we were in at the retreat in this rural area in the middle of nowhere. It all worked out. We got him to the hospital but I felt guilty about him having a seizure while we were away from home.

There are a lot of things that I don’t apply for. The virtual world has been great for me. It’s been good for being able to develop work. It was really exciting to do Halsted with Arizona Theatre Company virtually, just to have that chance to workshop the play with amazing people. Virtual theatre is really generous for people with disabilities and people who can’t go to the theatre anymore because of age or maybe they can’t get transportation. There’s a whole digital life that we can continue to develop as advocates, not just for ourselves, but for the greater community. My mother used to be a subscriber at three or four different theaters in Portland, Oregon. And now she can’t really go, she’s like eighty-nine. This pandemic has forced us to think about how we do things, how we take care of people, how we don’t take care of people.

The other day, I was reading an article that said COVID attacks the part of the brain responsible for empathy.

Carlyle: Really?

Elaine: What a tragedy.

Carlyle: How ironic.

Elaine: That might explain a lot about what’s happening in this globe. Why don’t we care anymore? I remember our wheelchair story. The Chicago hospital sent us home with a wheelchair, and we get home, and Brad grunts and points at it. I’m like, oh, he doesn’t want that in his house. And I’m like, you understand if I give that wheelchair away, they’re never going to give us another one. That’s the only one the insurance is going to give us.

Brad said something, which I heard as, “I want that out of here now!” So, I took the wheelchair out of the house and donated it to a local thrift shop. Later when he could speak more, he said that he knew if he sat down in that thing, he would never stand up again.

I had thought that working on the play together was maybe a way to bring her back into the world, bring her back into the theatre, which has succeeded to some extent.

Catherine: That’s very, very similar to what happened with John, that endless fight for laying the body, putting the body down into the chair. Also, there are different kinds of chairs and the really good one, the one that’s actually going to be really useful in his case, is not at all covered by health insurance.

So, it’s always those battles. I was interested, Carlyle, in what you said about the idea of dysfunction, that it has to be on purpose on some level. It ties into the issue of accessibility. It happens in so many ways, with the sidewalks and with bathrooms and with going to the theatre and just, like, you name it. I mean, how complicated is it to make things accessible? And yet it’s an endless dysfunction.

Carlyle: Basically, a lot of it doesn’t make any sense. But good people make exceptions, make a difference. Barb, she was starting to walk, and then she fell and broke her hip. She’s always trying to be more independent. So, what do you do? Do you inhibit that or let her be as independent as she dares? But it’s a risk. I mean, that fall took her back. We’re just coming back from that now. That’s like a couple years. But your wheelchair story reminds me of how Barb’s old wheelchair was a box, an ugly thing and an effort for her to move herself around in, and she doesn’t want an electric wheelchair. Here in Minnesota, you have to go to physical therapy to get approved for a new chair.

So, we went to a physical therapist. And I don’t know, I think there was something about our relationship that she was sort of attracted to, as well as Barb wanting to show her that she can get in and out of bed by herself and do many things on her own. So, this woman recommended this wheelchair. It’s a manual wheelchair, but it’s freaking state of the art. One of the things is it’s not ugly, it’s not an ugly box. It’s got great ergonomics and it can turn on a dime. She can stay upright and move the wheel with one hand and maneuver around. It makes such an enormous difference in her quality of life.

Elaine: We don’t judge the chair. Not at all.

Carlyle: Where my play, A Play by Barb & Carl, was done at Illusion, the board chair is also the chair of the Minnesota Stroke Association. So, there was a lot of community outreach. Barb, a shy, homebody kind of person, suddenly became a bit of a celebrity, which she discovered that she actually liked. I had thought that working on the play together was maybe a way to bring her back into the world, bring her back into the theatre, which has succeeded to some extent. So there are things that I’m very glad to have in my life. I’m not very glad to have her disabled, but there are things that were otherwise not accessible to us. Just like what you’re saying, how we know each other, how we are together. That might not have been.

Elaine: I would say two things have really helped me in this journey. One is beginner’s mind. When I write a play, I try to approach it like I’d never written a play before. Just do whatever happens in the play that you’re writing. Let the play tell the story. And then the other thing is William Goldman’s famous quote “Nobody knows anything.”

Carlyle: “Nobody knows anything.”

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This is a very powerful article. As someone I love is dealing with an early Alzheimer's diagnosis, and while things seem fine, I am holding caretaking closely and pondering what I need to do.